“Our memory is a more perfect world than the universe: It gives back life to those who no longer exist.” — Guy de Maupassant
To submit additional names, please contact us with, if possible, the name, dates of birth and death, place and cause of death, and any additional information you feel is appropriate. Please see the copyright information below.
By compiling this list, we hope to make people more fully aware of the seriousness of CFIDS/ME. Medical communities, media and governments understand neither how debilitating this illness is nor how those with it suffer. The United States National Institutes of Heath are not keeping track of the morbidity and mortality rates, although many have died and many more will if more is not done. The Centers for Disease Control and Prevention claim there have not been deaths reported to them. If you know of a friend or family member who had CFIDS/ME and has passed on, please help us in our quest to document the seriousness of this illness.
We are grateful for the help of William Young, who began the list and who compiled a great number of names on this list. Many of these people died of secondary illnesses attributed to CFIDS/ME. Medical doctors have pointed out that excruciating pain is the foremost reason that others have chosen to take their own lives. The majority of these patients did not have the medical care they needed; they suffered unremitting pain with little hope of relief or comfort. We acknowledge their suffering and hope that they have not died in vain.
“The living honour the dead, only a breath divides them.” — Paul de Monchaux
T. Faye Abramson, died in October of 2004 at the age of 46 following complications from surgery. Faye was trained as a tax attorney and worked until ME/CFIDS no longer allowed full time work. She established and ran the Burlington County CFIDS Support Group in New Jersey and offered help and encouragement to many patients. Faye was well organized and, although bedridden, was always ready to answer patient's questions and give them physician referrals. She was "incredibly determined" according to one patient who felt Faye was a lifesaver. She supplied an information table at her support group meetings with many articles. Faye was a long-term patient who left a husband, Howard, and two daughters, 10 and 4.
Pamela Schlangen Acher, died in her sleep in the early hours of October 27, 2003. From Baltimore, Maryland, Pam, who had just turned 59, was a very long term patient who had been wasting for a while and found herself unable to digest. She had been having heart problems during the weeks prior to her death and had been tested for arrhythmias just the week before. Pam was a courageous patient who found the medical profession a challenge to convince of the severity of her illness including federal (NIH) physicians. Always one to try and reach out to others to help, Pam was a valued member of The National CFIDS Foundation since its inception and a founder of the CFIDS Network of Baltimore that had been active politically. She left her parents and a sister as well as countless friends.
Ruth Allen, from Lexington, MA, died on January 21, 1999 of complications related to CFIDS/ME. Ruth was a warm and intelligent person who had been sick since the early 1980's with CFIDS/ME and spent most of her years, when she reached her 80s, suffering from one complication following another and was in the hospital for testing a great deal of time. She became so severe that she finally had to be placed in a nursing home where, in the fall, she gave up all of her medications knowing she no longer had any quality of life. She died months later of an influenza type pneumonia that her body could no longer fight. Ruth left three children, Peggy, Sue and John as well as her husband.
Rhonda Amen, Female. Age and cause of death unknown. Long term patient.
Jean Marie Anavitarte, 68, died on March 27, 2011 in Dorasville, GA. Jean had suffered from CFIDS/ME for many years and had previously survived breast cancer. Her second bout with cancer, despite her will to live, took her life. Originally from Connecticut, Jean loved life and was an inspiration to many. Her husband and one son predeceased her. Her ashes were buried in Arlington National Cemetary next to her husband, Raul, and son, Joshua. She left one son along with family members in Connecticut and Georgia who will miss her along with fellow CFIDS/ME patients with whom she kept in touch. (Source: S. Lund)
Kathryn Blaine Anderson, died on September 10, 2004 at age 40 after just six years of suffering greatly from ME/CFIDS, a disease that, in many physician's minds, doesn't exist. Kathryn's worst symptom of the illness was multiple chemical sensitivity which made the disease so much more challenging. In the end, just swallowing became impossible. Like most patients, Kathryn found that she was much more knowledgeable about her illness than most physicians and, of course, many who had no answers told her that her suffering was all in her head. She found one that understood her suffering, Jay A. Goldstein, M.D., who was her physician until he was forced to retire. Kathryn, a resident of Los Angeles, CA, was a student and a computer design specialist who worked for the LA Weekly. Identified as a gifted child, her quest for knowledge remained unquenchable. Kathryn leaves her parents, John and Ellen and a sister and brother-in-law who reside in England with their two young sons. A member of The National CFIDS Foundation, she will be remembered by many in the ME/CFIDS community.
Marie Anderson, Taken from BRAME (Blue Ribbon Awareness for Myalgic Encephalomyelitis).
Paul Anderson, 42, died from an overdose of drugs in July of 2003 in Galphay, England. Paul was stricken with M.E. just days before his marriage in 1995, which put an end to his London-based business. He was a brilliant translator who spoke ten languages. His wife was his main caregiver while he suffered from constant and increasing pain. A suicide note read, "I'm sorry. I love you. I can't take any more pain." His wife was later charged with not trying to save his life by calling for medical help earlier while the misinformed and biased press often referred to his illness as "hypochondria." She was acquitted.
Anonymous, 48 year-old female. Date of death unknown. Had CFIDS/ME for years, diagnosed less than a year before death. Cause of death: aortic aneurysm. (Source: CFIDS/ME support group leader.)
Anonymous, 42 year-old female. Date of death unknown. Had CFIDS/ME for 7 years. Cause of death: ulceric gastritis, died in hospital. Occupation: Ph.D. in computer programming and systems analysis. (Source: Letter from CFIDS/ME support group leader.)
Anonymous, 32 year-old female. Date of death unknown. Cause of death: suicide due to unbearable pain. Occupation, mother of three small children. (Source: Letter from CFIDS/ME support group leader.)
Anonymous, 19 year-old female. Died 1986. Cause of death: severe, progressive ME. (Source: letter from family member.)
Anonymous, 45 year-old male. Died April 1997 from complications of CFIDS/ME. Occupation: photographer with many interests. (Source: Support group leader and friend of deceased.)
Anonymous, Female, age, date of death unknown. Cause of death: "had a sensory pain of burning, almost scalding…lost bowel and bladder function…overdosed trying to relieve pain…" (Source: Paul Cheney, M.D., Ph.D. during questions following a lecture, 1996.)
Anonymous, Age, sex, date of death unknown. Cause of death: "…so severe that she was in a nursing home at age 29 and died from an intercurrent infection." (Source: Paul Cheney, M.D., Ph.D. during questions following a lecture, 1996.)
Anonymous, Sex, date of death unknown. Cause of death: "infections with poor nutrition and poor self care…was hospitalized, (and died)…suspect cardiac arrythmyias…" (Source: Paul Cheney, M.D., Ph.D.: questions following lecture, 1996.)
Anonymous, Female in 40s. Cause: Suicide. (Source: phone call from her friend.)
Anonymous, Age unknown. Died October 28, 1999 from complications of CFIDS. This male patient contracted CFIDS from his daughter 3-4 years prior to his death. Both had high EBV titres. Death was attributed to malignant lymphoma caused by a herpes virus. (Source: daughter of deceased.)
Anonymous, female, aged 44, of Florida who died from complications following chiari malformation surgery. She had sufffered from CFIDS/ME as well as fibromyalgia for many years. An outgoing, funny and spunky individual, she left two daughters and is sadly missed. (Source: Friend)
Anonymous, 62 year old female, took her own life on April 9, 2010, after a long battle with Chronic Fatigue Syndrome, Fibromyalgia, Graves Disease and Diabetes. (Source: RN, MI)
Anonymous (Bernard), died as of pancreatic cancer while in a UK hospice in early April of 2012. Bernard was in his early 50's and the cancer was diagnosed in 2011. He chose to forego aggressive treatment because he felt, with his long history of ME, it would be intolerable. His family and friends miss him. (Source: UK friends)
Anonymous (Terry), 58, died in the spring of 2012 after being sick for 14 years. He had been bedridden for the final seven years. His neurologist had suspected he had multiple sclerosis but, despite neurological symptoms and testing, he was never diagnosed with ME officially but merely told he had a "progressive neurological illness of unknown cause." He fit the the International Consensus Criteria for ME. Terry's cause of death was said to be heart failure. (Source: Facebook posting)
Edyth Antelline, 79, died on March 7rd, 2004 after a series of strokes that had rendered her paralyzed for nearly a year as well as a cancerous tumor in her stomach. "Edyth was a wonderful person" with a rare sense of humor and a real fighter for the cause of CFIDS/ME while struggling with the disease for 19 years. A published poet, Edyth was very creative, a lover of the color pink, and got her strength from the ocean. No matter how much pain she endured, she always made you laugh, recalls a friend. Another recalled, "Edyth taught me how to deal with CFIDS gracefully. We need more people in the like her in the world." She had 3 children, 6 grandchildren, and many great grandchildren that will miss her along with so many people in the San Diego area. (Source: PWME/C friend)
Charlene S. Arkway, 76, died January 15th, 2006 in Rhode Island. She was a support group leader for CFIDS/ME in the early 1990's in Newton, MA. Born in Illinois, Charlene was former social worker. She left a daughter and son, both of Massachusetts along with a grandson, two brothers and a sister.
Marilyn K. Asbury, 44, (January 27th, 1952 — December 26, 1996) Charlotte, NC. Marilyn became ill in 1983 and was diagnosed with CFS in 1986 by Paul Cheney,MD. She was a co-founder of CFIDS Association of Charlotte, which later became CFIDS Association of America. Marilyn served as both Secretary and Co-Editor of the first editions 1986-1992 of The CFIDS CHRONICLE. She served as an Executive Board Member from 1986-1992. As editor of the Chronicle, she edited, wrote articles, and personally folded and addressed each copy (by hand). With the support of a small volunteer committee of four or five members these were hand stamped, sorted by zip-code and then rushed to the downtown post office to be delivered to approximately 25,000 readers all over the United States. This duty alone consumed a minimum of two weeks work each month. Marilyn was committed to providing and educating CFS patients with as much information as possible. She believed knowledge dispelled fear and would further our own (patients) need for research. Marilyn took part in Paul Cheney's first Ampligen trial. Shortly afterwards, she developed breast cancer, which she courageously battled to the end. Marilyn was survived by her husband Louis Asbury III, and son, Louis Asbury IV. She also left behind many, many friends and fellow patients who loved her dearly. Marilyn lit the torch of knowledge, when CFS patients struggled and suffered in the dark. She led us into the light. (Source: family and friends)
Tracey Lee Ash, 26, died on March 7th, 2002 in Australia from CFIDS/ME related causes. Tracey battled with CFIDS/ME/FMS and multiple chemical sensitivities for many years. Tracey constantly searched for new possibilities of getting well, but in the end wellness became a faded and unreachable distant light. She left her parents, Glenn and Sandra Ash. (Source: family)
Sherryl Atkinson, died at the age of 50 in September of 2001 after many years of suffering from CFIDS/ME. Sherryl was a well known activist for the disease and died of viral pneumonia, a complication of CFIDS/ME. (Source: Anne-Marie Vidal)
Henk Arjen Baas, 47, died on August 27, 2010. He was diagnosed with ME and confined to wheelchair and mobility scooter, but accompanied with his beloved dogs. He couldn't cope with the misunderstanding and prejudices about this serious and devastating illness. The only way out for him was suicide. He wrote columns for a newspaper and for a Dutch ME/CFS website He lived in Enschede, the Netherlands. (Source: Administrator: www.mecvs.net).
Rebecca Badger, Female, age, cause of death unknown.
Barbara Baffa, 61, died on August 3rd, 2003 from CFIDS/ME related causes. An unidentified infection in her lungs hospitalized her in early July and spread to eventually shut down her major organs. Barbara, from Durham, Connecticut, was a cultural anthropologist who had CFIDS/ME for 25 years. She tried to find any options for her illness, researching the subject in depth. Said a phone friend, "Her penetrating insight and level of awareness always opened up new insights for me…" Barbara left her husband, Ronald Capozzi who has shared her medical diary with the National CFIDS Foundation and a brother, Chet. Barbara was born in Plandome Manor, NY. She was a graduate of Swarthmore and Yale Universities. She had taught Cultural Anthropology at Southern Connecticut University and had served as medical social worker, counseling terminally ill patents, at the Meriden-Wallingford Hospital.
Gurli Bagnall, died on August 17th, 2011.Born in Denmark, Gurli spent most of her life in New Zealand where she became a well-known advocate for CFIDS/ME. A former teacher, she became sick in the 1970's. Her husband divorced her after 21 years when doctors treated her for a mental disease and the medications they prescribed worsened her. In 1991, she was finally diagnosed correctly and submitted a claim for "medical misadventure" which she eventually won but "at great cost to my health." Gurli had a novel published and was a dedicated advocate who wrote and blogged about the illness and how the psychiatric field has distorted and ignored all the science that has harmed so many with CFIDS/ME. Her daughter, Krissy, was at her side when she passed and many patients, worldwide, will miss her.
Gloria Baker, 53 year-old female. Died Dec. 1994. Had CFIDS/ME for 10 years. Gloria had been one of the earliest Ampligen trial patients. She had, at the time of her death, lost control of all bodily functions. Cause of death: gunshot wound. Suicide has been questioned by friends.
Sharon Bandel, 47, died September 9th of 2016 from complications of influenza and cancer, outcomes of her CFIDS/ME. She was from Melbourne, Australia and had suffered many years with her illness. A friend wrote that “she was always a loving and giving person” and left “an amazingly loving and supportive husband.” Sharon loved nature and took wonderful photographs. (source: fellow PWC/ME Phyllis)
Jean Bannks, passed away in 2006 from ovarian cancer after many years of suffering with CFIDS/ME. For many years, Jean had a support group in Rockford, IL. When she was no longer physically able to run her support group, she continued to take calls from patients. (Source: CFS,FM, & Chemical Sensitivity Coalition of Chicago)
Carli Barry, 27, took her own life on her 27th birthday on February 27th of 2001, after she found that friends let her down, the benefits agency made life hard, and the hurdles of having a disease so misunderstood left her depressed in addition to her devastating symptoms. Although her body was found just 300 metres from her flat in England, the police did not locate her for 9 days although their cars were barely 12 metres from her body. A full year later, her parents are still waiting for the inquest results. (Source: Sheila Barry)
Penny Barshied, died 1985. Cause of death attributed to a brain tumor. Although Penny was never diagnosed with CFIDS/ME, she became sick at the same time as her husband and was successfully treated with a herpes drug at the NIH that allowed her to live years longer. Her husband, a PWME/C was an advocate in the very early days of "CFIDS." Penny was a schoolteacher and the two teachers who taught with her in the same classroom also developed brain tumors at the same time. From the newest information we have learned about this illness, we feel comfortable adding Penny's name to our Memorial List. (Source: husband, Robert)
Robert Barshied, 69, passed away peacefully on February 23rd, 2018 in Palm Coast Florida. Bob was a loving father, husband, and grandfather. He was a welcomed friend and generous contributor to all he met. Bob obtained his bachelor's degree with honors from Clarkson University and master's degree from Rensselaer Polytechnic Institute. His education allowed him to blend his love of the outdoors and his work. Bob was especially proud of his work preparing the facilities for the 1980 Winter Olympics in Lake Placid for Team USA. Bob was an avid sportsman and golfer. He will be missed by all that had the pleasure of knowing him. He is survived by his beloved wife Kathleen, his son Scott, brother Willis, and three cherished grandchildren.
Melissa Bartelt, 43, died in 2007 at age 43 by an intentional overdose of medication. She had suffered with CFIDS/ME for years in Florida with little or no support from her family who did not "believe" she was ill. She tried for years to make it on her own. Melissa was an incredibly beautiful woman both inside and out. (Source: friend)
Jodi Lyn Bassett, 39, died on June 11th, 2016, at home with her family surrounding her. She was a talented CFIDS/ME activist who blogged on the Hummingbird’s Foundation for ME on the internet as well as the author of a few books. Her family members in Western Australia described her as “most amazing, caring, intelligent and funny” and her internet writings were read by many patients around the world. She will be missed by her parents, whom she lived with, as well as many other family members and fellow patients. (Source: NCF member, obituary)
Christine “Tink” Bastian, passed away on June 23rd, 2016, after battling CFIDS/ME for more than 15 years. Tink lived in Oregon with her husband, Waldo and two cats as well as two dogs. Tink is also survived by two daughters, Lydia and Rene and two grandchildren. She was an artist and interested many as a blogger on the internet. (Source: Facebook, PWC/ME Phyllis)
Eddie (Ed) Eugene Bauer, 56, died June 18th, 2010. Ed had suffered with CFIDS/ME for nearly two decades after both he and a close friend became sick at the same time. He was a painter for Boeing aircraft prior to being sick and tried to glean as much information as possible following his diagnosis. He loved to help others and began online groups to extend his reach. He was known and loved for his wonderful sense of humor. When his house caught fire in Renton, WA, he made it out but was horribly burned and had to be put into a medically induced coma. He succumbed less than two weeks later. Eddie is survived by his parents and a brother along with many friends who miss him. (Source: friend, family)
Mel Jayne Bayley, 48, died just days before her 49th birthday in October of 2016. She began a support group online for ME sufferers in Australia and fought her government to recognize her illness and get compensated for her primary caregiver who was her son. She would drown out her acute pain by playing Pink at full volume yet rarely complained. She focused on helping others and so many will continue to miss her. (source: fellow PWC/ME Phyllis)
Rosie (Rose Mary) Bayman, was bedbound with ME for 5 years before she died in 2018. As she lay in silence and in darkness, she made up poetry in her mind and use a recorder. Rosie lived in Warwickshire, England and often offered her poetry on twitter where many enjoyed her humor and warmth. (Further information welcomed) Darden Burns, 65, took her own life after suffering with ME since she was in college. Darden was a talented singer as well as a guitar player and pianist who taught piano and directed a concert series. She grew up in the northeast but, when married, moved to an island off Washington state and enjoyed hiking, and gardening as well as teaching music. After careful researching, she tried various methods of treatment but found none helpful. She is survived by her husband, Michael, two daughters and one grandchild as well as her brothers.
Lisa Beach, lost her battle with ME between January 10th and 14th of 2001. Lisa lived in Homestead, Florida and was had fibromyalgia along with many other health problems including asthma and diabetes.. When one support group leader tried to contact her and received no answer from this homebound patient, she went to her home, only to contact police who found her in her bed where death had taken her. No autopsy was performed.
Jacquie Beckwith, 23, died April 29“ in 2019. Doctors and surgeons were unable to help when they found herniated lower intestines that had wrapped themselves around her feeding tube. A group in her native UK had named her “Warrior of the month” just a few months before her death. She is missed by her husband, Judd, along with many relatives and friends including other patients she had been in touch with.
Vanessa Bellamy, 39, died in early June of 2010. She had gone to bed early and her husband, Adam, found her unconscious on the floor hours later. She was taken to hospital in Welwyn Garden City, England, where she was pronounced dead. An inquest found nothing major was wrong with her. Vanessa had been diagnosed with Chronic Fatigue Syndrome and was given antidepressants. The coroner said she died of natural causes. (Source: UK newspapers)
Carol Bellaria, 63, died in 2005 of lung cancer and other complications of CFIDS/ME. Carol had three children and, after they were grown, went to college and got her degree in social work. She was a counselor at a home called “Living Opportunities” when she became disabled with CFIDS/ME. Her devoted husband, Carl, was an officer in a support group in Buffalo, NY, called CFIDS United. She died just before their 40th wedding anniversary. She is missed by many friends along with her family members including the grandchildren she adored.
Richard Belman, 77, died of Parkinson's after many years of suffering. Richard spent years involved in schools as a principal and establishing schools in Los Angeles, CA. A type A personality, he pushed himself to research his illness for 14 years after his diagnosis, even going to Germany for blood transfusions that only served to transmit a grave infection. He was fascinated with the research funded by the National CFIDS Foundation as well as the charity being all volunteer and determined to find answers. Richard was a "golden benefactor" after his demise.
Fern Belvin, 58, died on September 4th, 2002 in Virginia Beach. Fern had suffered from CFIDS/ME for 18 years. She is survived by her daughter, Adrienne, her husband, David Warren, one brother, as well as a grandson whom she adored. Before becoming sick, Fern was a registered nurse for 27 years. Helping her fellow suffers even after her death, memorial donations went to The National CFIDS Foundation earmarked for research.
Patricia Bennett, 52, died in February of 1999. Patricia had CFIDS/ME for more than ten years and died from cancer. She lived in Fountain Valley, California and is survived by her husband, Gary and three grown children. (Source: Friend J.Rohde)
Robert “Bob” Benson, died in his early 80’s following complications from a fall in 2021. He attended Clemson University on a basketball scholarship, owned a soccer team, the Carolina Lightnin’, which won a championship. He also owned a World Tennis Team and ran his own business for decades. He was a lifelong fan of the Pittsburgh Steelers and the Pirates. He lived for many years with CFIDS/ME and upon his death his obituary recommended monetary funds be donated to the NCF. His death left many in sorrow including his wife Marjory, his son Michael and his three grandchildren.
Donald R. Bentley, 79, passed away on January 9th, 2013. A long-term CFIDS Sufferer, Don was a proud veteran of the U.S. Army who served during the Korean War and worked at DuPont for years. A talented artist with a wonderful sense of humor, Don loved fishing and camping and was a member of a VFW post. For years, his political cartoons were published in The National Forum and enjoyed by his fellow CFIDS/ME patients. Don left his wife of 25 years, Shirley, along with sons and daughters that gave him 18 grandchildren and one great-grandchild. Don was in touch with many researchers and patients seeking answers to his disease. A celebration of his life had many sharing their warm memories of him. His interment will be held this spring with Military Honors. He fought this disease in every way he knew how. He will be missed by many.
Ellen Berntsen, 79, mother, grandmother and singer, died on June 18th, 1998, after seriously suffering in her early 30’s following exposure to heavy duty pesticides sprayed by her neighbors. She was severely ill for the rest of her life and was mostly bedridden or housebound. Her son and two grandchildren also developed the disease and her son, Lou, died just a year after Ellen’s death.(Source: PWC/ME grandchild Jenny)
John Louis Berntsen, known as Lou, 54, died of a heart attack brought on by his CFIDS/ME. Lou was a photographer, small business owner, and a lover of life who suffered a prolonged and torturous illness before it took his life. He was a gentle, funny, loving and a fiercely intelligent and talented person. His illness became progressively worse over time. He lost his business of twenty years and spent his time in agony, often unable to speak, in bed or in his specially designed anti-pain recliner. He would spend twenty minutes to crawl to the bathroom, resting every foot or so, and another twenty minutes to get back to his bed. He died an excruciating death at home, just two weeks after being told by his doctor that he was in perfect health, leaving behind his wife, Amy, as well as both a daughter and son who now suffer from the same illness. (Source: PWC/ME daughter Jenny)
Anne Berry, 47, passed away in 2017 from CFIDS/ME after suffering for years as she was bedbound in her home state of Illinois. A friend described her saying, “I’m missing faith in HHS, NIH and CDC.” She had been diagnosed with Sjogren’s Syndrome and complex regional pain syndrome. She is sadly missed by family and many friends
Danila Bertonati, 32, died on May 18th, 1976, in Genoa, Italy following a two year courageous struggle with Burkett's Lymphoma. Danila had a bone marrow transplant and other treatments. She left her loving parents and many friends who remember her brave struggle to live. (Source: family member)
Gina Giarrusso Bettor, battled CFIDS/ME for many years and died from pancreatic cancer on December 2nd, 2017 in Florida. Following surgery for her cancer, she suffered a heart attack but was grateful she had survived. Her ex-husband took care of her along with their son until, two years later, her body gave up. She is missed by both family members and friends. (Source: fellow PWC friends)
Sharon Birchwood, 52, was found murdered in December of 2008. A long-term sufferer of ME, she was on disability and lived in Ashtead in the United Kingdom. Her ex-husband, Graham, an ex-convict, was found guilty of arranging to have her murdered after an eight week trial so he could collect on her life insurance and her house. Sharon was described by the media in England as a ”frail ME sufferer… who walked with a walking aid” and others described her as “reclusive” but “a lovely person.” (Source: Daily Mail/UK)
Patricia S. Blankenship, 67, died on May 16th, 2016 after a long battle with CFIDS/ ME. Pat was working as a government telecommunications consultant in the D.C. area when the disease struck her at age 40. After a lengthy battle to get diagnosed correctly, Pat became tried to remedy the way her disease was mistreated by the NIH and the CDC although she admitted, "My involvement was small and brought about no positive outcome." She also testified at the CFS Co-ordinating Committee (now the CFSAC) and asked them why they don't respond to material that is not true in magazines and newspapers, again to no avail. She found her family had little understanding of the illness when she moved back to Alabama and did little to try to help her. Pat is missed by many friends she made while advocating for this illness and many whom she kept in touch with online. (Source: Pat's own posts on the web and many fellow PVVC/MEs)
Anitta Bliss, not yet 40, January 18, 2000 "after a long and painful struggle against CFIDS/ME." Anitta was a resident of San Jose, California and a member of The National CFIDS Foundation, Inc.. She leaves her parents and a sister, Jean, and a fiancée, Justin Milliun. (Source: family friend)
Sandy Blythe, was a paralympic champion for years who represented Australia from 1988 to 2000 and won a gold medal in Atlanta in 1998 where he was a co-captain of his wheelchair basketball team. Sandy's retirement was forced upon him after the Sydney Games when he was diagnosed with chronic fatigue syndrome. He took his own life in late November of 2005 asking that donations be made to an Australian CFS group. He leaves a partner, Paula Coghlan, and his family.
Elise Bomford, died in mid January from CFIDS/ME related lymphoma. Elsie belonged to the ME Victoria Association in Canada. She affected many with "her quiet strength and generous warmth." She was 74. (Source: Margaret Sherwood)
Margie Boon, 52 year-old female. Died March 27th, 1996. Long-term patient. Cause of death: Sub-dermal hematoma. Founder of Sierra Vista CFIDS Support Group. (Source: letter from friend.)
Eric W. Booth, M.D. 48 year-old male. Died June 18th, 1995. Had CFIDS/ME for 16 years. Cause of death: cardiac dysrhythmia, cryptogenic myocardial fibrosis. Occupation: Radiologist. Despite illness, campaigned for research and better treatments. Wrote in 1991, "I have been very seriously ill for the last five years… Despite my feeling this way, I am unable to convey this to my medical colleagues… I have come to believe that physicians suffer from "compassion fatigue." (Source: BMJ, Vol. 311, 28 Oct 1995 and Death Certificate.)
Lujuan Boreermeyer, 50, died of complications of CFIDS/ME (cancer) on December 25, 2003 in Texas. She left a daughter, Tina, mother, sister and brother along with a partner in life, Sue Turicchi. Lujuan left a lasting impression on all that she met and is missed by many.
Marion A. Boutcher, died on April 23rd, 2006 at the age of 73, after a long and difficult battle with CFIDS/ME. Marion was in the first trial of Ampligen from 1988 to 1993. Shortly after she went off Ampligen, she was diagnosed with a rare form of breast cancer. Hemispherx BioPharma consistently ignored her calls even though she lived near their home office in Philadelphia. Her original tumor was never identified although it was an estrogen receptor type. It slowly metastasized throughout her body. She broke a hip in February which furthered her decline until she died in at Abington Memorial Hospital. Marion kept in touch with many of those she met while on the Ampligen trial and was a brave and compassionate person. She left a devoted husband, B. Frank as well as a son, Harry R. and a daughter, Debbie who join many who will miss her enriching their lives. (Source: friend and fellow Ampligen patient)
Terry Boyer, 65, died in 2019 in February. A resident of the state of Washington, he graduated St. Martin’s University and held various jobs and helped anyone he felt could use his help. He enjoyed hiking and taught special education but had to give both up when he got CFIDS/ME at age 40. He is missed by his wife and 4 children as well as grandchildren and siblings.
JoAnn Boyle, 53, died on October 3rd, 2005. She had a long-standing CFS diagnosis with complications of ovarian cancer, polymyositis, legionaire's disease and, finally, brain cancer. JoAnn volunteered for the Wisconsin CFS Association as a group leader, then a contact person and then as a moderator for their Chat room. Many will remember JoAnn's help and her willingness to share her knowledge with others.
Retha Mae Brannon, a member of the SJ CFIDS/FM from July, 1991 to December, 2011, was a Stockton. CA resident for 70 years. She passed away quietly at a local hospital on December 28, 2011 after many long many years of suffering with CFIDS/ME. Retha was a retired local bookkeeper/accountant, who enjoyed spending time with her nieces and nephews. Retha came to Stockton as a five year-old. She was born in Cherokee Indian Territory, Poteau, Oklahoma. (Source: San Joaquin CFIDS/FM Support Group, CA)
Rachel Bray, 48, died in her sleep in February of 2009. The listed cause of death was heart failure. Rachel had been diagnosed with CFIDS/ME as well as several other illnesses including fibromyalgia and multiple chemical sensitivity. She suffered for many years and is remembered fondly by those who survived her. (Source: husband, Ben)
Dianne Marion (McLeod) Brayton, 77, formally of Needham and Wellesley, died on November 28th, 2013 after many years of suffering with CFIDS/ME. When an infant, Dianne was found in a trash barrel and left on the doorstop of an orphanage in Cleveland, Ohio. She was adopted and brought up in Massachusetts. A former LPN, Dianne volunteered her time to be the leader of a support group in the Needham, MA area for CFIDS/ME and was always available to others, even traveling distances to visit some that were housebound. Before her disease struck, Dianne loved to sing and play the piano. She was very artistic and talented. When she became sick, her own family was unsupportive and dismissed her as a mental patient. She loved the pictures of her grandchildren yet never got to see many of them in person. She had thought of suicide as her suffering became much worse but didn’t act fast enough and she spent her last years in a nursing home where, again, she faced staff that had no knowledge what she was suffering from. Dianne left four sons and their families but it is her friends that continue to miss her warmth and her caring. (Source: several MA PWC/MEs)
Jason L. Brekenridge, 23, died on December 16th, 2005 in Baldwinsville, NY. An autopsy found he died of a seizure. Jason was disabled with CFIDS/ME shortly after receiving two associate degrees in technology and business management from Bryant & Stratton College. He had to move in with his parents and spent a great deal of time researching the disease and posting his hypotheses online along with trying experimental therapies in his determination to improve. He was looking forward to participating in a research endeavor and his physician has named this New York RNA study after him in his honor. A member of the National CFIDS Foundation, Jason leaves his parents and grandparents and his friend since childhood, David Lum. (Source: friends and Syracuse Post Standard)
Donna Brewer, died after suffering with CFIDS/ME for many years. Donna died from heart failure. She was the leader group leader of the Western North Carolina CFIDS Support and Advocacy Group. No date or further information was given. (Souce: letter from support group)
Alice G. (Terry) Bricklin, 71, of West Barnstable, MA, passed away at her home on May 22nd, 2014, after suffering with CFIDS/ME and a heart problem from her disease for many decades. Alice had previously lived in Centerville and Nantucket. She had a degree in psychology and authored a book in 1979 called MotherLove: Natural Mothering, Birth to Three Years. Alice was survived by her daughter, Deirdre Moynihan and her son, Brendon Bricklin along with 5 grandchildren. Two brothers and two sisters also survived her and a brother and sister predeceased her. Alice kept up with all the newest scientific information on CFIDS/ME but ways to help her own suffering were too slow in coming. She will be missed by many. (Source: relative, obituary)
Kathleen Briglio, Female: age unknown. Died July 1996. Cause of death: Brain tumor. Active member and former president of the ME Victoria Association.
Julia Browell, aged 61, died in an Australian hospital in the state of Victoria of multiple organ failure with her daughter and grandchildren by her side in August, 2017. Julia lived with ME for most of her adult life and became involved with advocacy in Australia and the UK well before the internet. Her motto was "Nothing about me, without me" and "You can't walk in my shoes, so don't presume my voice.” She was active in the first international Yahoo support groups and an administrator in Facebook advocacy in Australia as well as in the international ones. In Julia’s final days, she attempted to educate the medical staff about the illness. (Source: Phyllis, ME group member)
Chris Brown, got CFIDS/ME when she was 31 and died after many years of the illness in December of 1999. She was taken to the hospital and, it was reported, "simply stopped breathing." Her physician believes it was her heart. After many years of battling pain, Chris leaves her daughter, Michelle, also an CFIDS/ME patient, and her husband. Chris lived in New Zealand. (Source: Australia's Country Network.)
Judy Brown, Female, age unknown. Died 24th August 1996. Long term CFIDS/ME patient. Cause of death: self induced drug overdose. (Source: The Fitness Report, September, 1996.)
John Thomas Brynmor, 54, died in 1988 as he collapsed leaving the United Kingdom’s House of Common’s gym. John was a Member of Parliament in South Wales when he was diagnosed CFIDS/ME and was exiting the gym after he had been told that graded exercise therapy (GET) was the way to recover from his illness. He had been a Parliament member since 1970. (Source: Wikipedia)
Rosie Buchanan, died on the 13th of May in 2019 after years and years of suffering. She was diagnosed with severe fibromyalgia but also had CFIDS/ME that made her bedbound at home. Her adult children are, in their own words, “heartbroken”. Rosie was from northern Ireland.
Martin John Buckley, died October 11th, 2002 at age 71. A former schoolteacher, Martin, upon retirement, published several military history books. He belonged to the Northern Rivers CFIDS/ME/FM Support Organization in New South Wales, Australia and tried to help others as much as possible despite living with ME. Martin's muscle weakness grew so profound that, toward the end, he could not keep his eyes open and had trouble eating and speaking. He had trouble holding his head up until the weakness affected the heart and he stopped breathing. He leaves his wife, Joan, and his family. (Source: Merle Fullerton, NR CFIDS/ME/FM)
Anita L. Burgess, died September 29th, 2011 following several small strokes after having surgery to reattach her colon in order to close her colostomy, all which forced her to enter a nursing home. A former nurse and a tireless advocate for CFIDS/ME, Anita was a member of the National CFIDS Foundation since the founding of the charity. Formally a physically active racquetball enthusiast and hiker, Anita formed a support group for multiple sclerosis and CFIDS/ME in Colorado and was active in an advocacy group that was for medical professionals that had CFIDS/ME. Anita was a joy to talk with despite years of suffering. She had moved to Florida with her beloved pets a few years before her demise. Anita left two sons, Todd and John, two sisters and a brother and two granddaughters along with many relatives and friends who will continue miss her. (Source: multiple friends)
Linda Gayle Hayes Burke, 68, lived in Ozark, Alabama. She died in 2016 of a heart attack. Linda suffered with CFIDS/ME for many years. She is survived by her husband or 50 years, James, along with two daughters and a son, grandchildren and great grandchildren. (Source: Facebook, PWC/ME Phyllis)
John Preston Burns, 77, died on June 16th, 2014, the same day just five years after his friend, Nancy Kaiser, died. Both were both in the first trial of Ampligen held in Nevada in the 1980’s and both died of severe pulmonary problems from CFIDS/ME. Born in California, John worked in management for Xerox in their medical division and lived in Arizona and Nevada before moving with his wife of 29 years, Marian, to Missouri. John loved boat racing and cars and held the NHRA Drag racing record. He is survived by his wife, a son and daughter, grandchildren and great-grandchildren along with a brother and many friends.
Christopher John Burrows, 35, lived on the Isle of Man and was diagnosed with CFIDS/ME in his early twenties after twice taken to different health facilities to treat depression. In March of 2013, his mother, Lynn Burroughs, found her son had hung himself. She was critical of the health service that did little to help his suffering and seemed only to make him worse. (Source: Manx Independent)
Holly Butcher, 27, passed away on January 4th, 2018. She had written a long ode about life and put the entire ode online knowing her death would come sooner than theirs. Holly wrote beautifully on Facebook and the Australian is missed by many worldwide.
Chris Butler, died in 1999 after struggling with CFIDS/ME for years and the death was reported in the Country Network newsletter of Australia.
Joanna Butler, died in England in 1997 of CFIDS/ME. Born in 1972, the last two years of her life were spent bed-bound and required tube-feeding by her devoted parents. Joanna was from Leaminton Spa in Warwickshire. A police investigation followed that cleared her parents of any wrongdoing but they were finally forced to move after being continually hounded. Newspapers in the UK carried the story of Joanna's tragic life. (Source: ME Action, U.K., Eileen Marshall and Margaret Williams)
Brenda Calabrese, a long-term CFIDS/ME patient died of breast cancer late in 1999. Brenda was a resident of Massachusetts who found her physical deterioration forced her to move in with her mother for help. Brenda will be missed by her family and fellow patients. (Source: PWCFIDS/ME friend.)
William Morton Caldwell, Jr., Ph.D., 74, died June 1st of 2015 after being disabled by CFIDS/ME along with COPD, Parkinson’s and dementia. He was an Assistant Research Professor who, eventually, became the Director of the Hiroshima Institute of Technology. He co-authored many papers and designs related to cardio-vascular research, many that directly pertained to CFIDS/ME. He left his wife, Kathleen, a sister and brother. (Source: online obituary)
Harvey Keith Carden, Jr., Ph.D., 64, died in the early spring of 2018 after suffering for years from CFIDS/ME. Harvey lived in Anaheim, CA with his wife. He was an inspiration to many as he increased awareness with his Light Up the Night Blue for May 12th. He is missed by his wife, son and daughters along with other family members and many patients.
Mary Louise Cardillo, Female in early 40s. Died July 1995. Cause of death: autopsy revealed nothing. Died in hospital. When her physician, Anthony Komaroff, M.D., requested samples and sent them to another laboratory, high levels of HHV6 were found. A warm and brave person who so wanted to enjoy life. (Source: letter and test results from surviving parents, friends.)
Pam Carmichel, 59, died in May of 2016 in Melbourne, Australia. She had taught school and had to fight her insurer to receive the medical help she needed. She faced CFIDS/ME bravely and always tried to put her children’s needs first. A young man she befriended because he, too, suffered from the same illness said she faced all the insults that come with this misunderstood disease with strength and dignity. (source: fellow PWC/ME Jeffrey)
Linda J. Carpenter, 60, died Oct 23rd, 2011 after years of suffering with CFIDS/ME. Born in Los Angeles, CA, Linda was graduate of the University of Massachusetts and was a speech therapist and medical herbalist/nutritionist. She succumbed to the illness at a nursing home in Stuart, FL. Linda is survived by her parents from Florida, a sister from Colorado and a brother from Delaware. (source: FL obituary notice)
Rebecca Bramlett Carter, 47, died December 26th, 2005, at St. Mary's Hospital. "Becky" was a CFIDS support group leader from Watkinsville, GA, member of her church choir and involved with Le Leche League and the symphony orchestra. A caring and compassionate long term patient, Becky was admired and loved by many in the CFIDS community. She left her husband, Stan, and three children, daughters Shelley Elizabeth and Anna Carol and son, Colton Harrison, as well as her parents, Dr. Gene Bramlett and Carol Hilton Bramlett. Taken from us far too early in life, Becky will be missed by many. Donations in her memory were made to further CFIDS research.
Ruth D. Carter, 66, of Belmont, MA died on December 20, 2003. Ruth died by her own hand after a new physician told her to find another physician to prescribe her medications. After 15 years of struggling with ME and housebound for more than the last four, Ruth decided that she had had enough. Ruth graduated from the University of Chicago, was invited to participate in the U.S. Olympics for her horsemanship, and was an avid skier. Extremely intelligent and vocal, Ruth made her views known to government employees and embassy personnel. Ruth is missed by a caring and supportive husband, Weld, her son and daughter-in-law from Manila, David and Cris Rosenthal, and two grandsons along with a number of friends.
Aylwin (Jennifer) Catchpole, a longterm ME sufferer from Canada, died by her own hand in August of 2010. She was a single mother who had one son diagnosed with ME at age 10. When she felt she was too ill to care for her children, they moved in with their father. Aylwin wrote prolifically on the internet about the illness and felt strongly that ME was not CFS. She had strong food intolerance and one major relapse left her housebound and unable to read or write. Friends set up a memorial fund in her name. (Source: Matt Smith)
Beverly A. Chabot, 80, died January 17th. Two years prior to her death, she under-went heart surgery where they put Bev into an induced coma for the procedure. She had many neurological problems following the surgery and spent much time in a recuperative center. Born in Massachusetts, Bev grew up in New Hampshire and graduated from University of NH. She served proudly in the Air Force and worked at General Electric and, later, as a medical secretary. She was always eager to help and to educate others. After starting a support group for FM, Bev was active in the Seacoast Area Fibromyalgia/CFIDS/Chronic Pain Support Group and a crusader for many. It wasn’t unusual for Bev to start a conversation with a joke. Bev is survived by her husband of 55 years, Paul, and their four children along with 9 grandchildren. Her acts of kindness will continue to be remembered by many.
Gail Chamberlain, 40, died in hospice on September 30th, 2016. Gail lived in Dublin, Ireland, and had also been diagnosed with Ankylosing Spondylitis and Lyme Disease but fit the criteria of CFIDS/ME much more. She is greatly missed by her mother as well as her sister and brother-in-law and other relatives and many friends who also suffer with ME. (source: fellow PWC)
Daniel Chang-Bard, 21, died in the spring of 2012. He got sick while a student at McGill University and when he was preparing to go to Peru to volunteer at an orphanage along with some fellow students. He had four vaccines that were the trigger to allow CFIDS/ME to take over his life for the next three years. Daniel used to play the saxophone and many sports as well as earning a brown belt in karate. That was replaced by flu-like symptoms, nausea, pain and fevers. He could no longer walk his dog or go on the computer although he had formally made YouTube videos and tried to start a support group in Toronto. His symptoms became so intense that just resting his head on a pillow was not possible. Daniel left his parents, siblings, grandparents and many more relatives and friends. (Source: fellow patient)
Emily Louise Chapman, died in February 2006, age 20. She had been diagnosed with CFS at age 13, and in the last year of her life, she developed chronic pancreatitis; before her illness she excelled in sport, academic work and creative arts. Emily’s deteriorating health was exacerbated by the relentless hospital programs over 15 months and medical abuse. After a period at home in which her condition improved she refused to be readmitted to hospital, as demanded by the specialist, and her parents were forced to fight to prevent her from being compulsorily removed from the family. After 7 years of severe illness, medical mismanagement and abuse, Emily took her own life in hospital; the insults and abuse that she suffered from medical staff in the last 8 weeks of her life were strongly criticised by the Coroner at Emily’s inquest. Unable to attend school from age 14, Emily endeavoured to keep up with a variety of environmental, social and political issues from her bed. When well enough, she maintained a network of penfriends, supported and lobbied on behalf of various causes, and became a member of New Writers Group Inc. In defiance of her illness, she took every opportunity to support and reach out to others. She left behind her parents and three siblings, and the request that people “teach” the medical profession about the realities and needs of patients with ME/CFS.
Rebecca Grace Childs, 23, died of respiratory complications of CDIDS/ME on April 27th, 2010, after a courageous fight with it since she was a young child. Becky was born in NJ and moved to North Carolina following her high school graduation. She graduated Wake Technical Community College a year before. She enjoyed learning and spending time with her family and friends. Becky was predeceased by her father, Peter, and is survived by her mother, Carol, a sister, Rachel, and a brother, Peter. (Source: fellow NJ PWC/ME)
Jennifer Chittick, 31, died in May of 2019. Before CFIDS/ME hit her, she was a hard-working woman who was excited about soon to be a primaiy school teacher. At just 21, she fell ill but doctor after doctor dismissed her complaints as merely being mental even though she was reduced to her retired parents having to take care of her. She lived in Glasgow, England and landed her first teaching job soon after graduating. Despite teaching, she said, “Eventually I became so weak that I couldn’t dress myself or get off the couch” until she collapsed and was brought to a hospital but the doctors were ignorant of her illness. After a neurologist finally correctly diagnosed her, she still received both CBT and GET that worsened her condition until she died.
Carol Graham Chudley, died May, 1998 of a freak accident after years of suffering from CFIDS/ME. Carol was born in Illinois but became a Canadian citizen in 1967. A gifted potter, gardener, and author, one can read of her suffering in Between Gardens, published in 1999 by Polestar Book Publishers of Canada.
Roger Marcel Cicero Ciceu, 45, died on March 24th, 2016. He was one of Germany's best-known jazz performers. When just a teenager, Cicero appeared on television with his father's group as well as with a youth jazz orchestra. He studied jazz at the Amsterdam Academy of Arts and quickly became a famous performer who was featured in films as well as putting out albums. Ciceu supported PETA, the animal rights campaign and was on his second of a four-year tour when an onset of CFIDS/ME stopped him from continuing. He left behind a 7 year-old son, Louis, along with thousands of fans that did not expect his untimely death.
Kathie Claar, 52 year-old female: Died August 24th 1996. Long term CFIDS/ME patient. Cause of death: self-induced drug overdose. Oak Harbor, WA, USA. (Source: letter from friend.)
Bess Clark, died in 1999 after a long struggle with cancer. A support group leader and a warm and compassionate person, Bess taught her group how to have fun while barely functioning. (Source: Dolores Hudson)
Paul Joseph Clark, died on September 27th, 2016 in his home country of New Zealand after suffering for many years with ME. His mother predeceased him. He left his father and seven siblings along with nieces and nephews. (Souce, The New Zealand Herald)
Ruth Clark, 69, a Wisconsin CFIDS Association support contact, died on March 12th, 2003 of liver failure. Ruth was a long time CFIDS/ME patient who sought alternative and traditional care for treatment of severely disabling symptoms. Alternative practitioners blamed traditional medicine for her liver failure and traditional practitioners blamed alternative. Ruth, herself, was too sick to care. Nothing helped her pain, stomach and intestinal problems. Ruth was often unable to eat. She was a real life teeny tiny woman but one with a big heart and the drive to help others with CFIDS/ME as best she could. Ruth leaves her husband and other family members. (Source: Pat Fero, Wisconsin CFS)
Theodore Cocaine, 36. Died December 1998. Cause of death: massive coronary.
Carol Sue Coffee, died August 7th in a hospital at the age of 57 "fighting bravely to the very end." Carol enjoyed golf, reading and computer work and had special friends and relatives who miss her. She tried everything possible to "heal" from her lengthy disease, and she appreciated each day. She is survived by her husband, Jim, of Jenison, Michigan and many relatives and friends. (Source: Support group leader and friend)
Sophie Coldwell, 17, died of leukemia less than two weeks after doctors at a walk-in clinic in England sent her home saying she was just tired and had tonsillitis and gingivitis. She had already been diagnosed with “CFS” weeks earlier and was a freshman at Solihull Sixth Form College. Her parents, Andy and Sherry, called an ambulance but Sophie lost consciousness and died on March 17, 2013, after arriving at the Solihull Hospital. She’s missed by her parents and her younger sister, Katie, as well as by her boyfriend, Matt. (Source: SWNS News, UK)
Ken Coleman, died in early spring of 2015 from lymphoma after severely suffering for decades from CFIDS/ME. He knew that his lymphoma was from his long and debilitating disease. Ken had done strenuous work in the past until he found even trivial things took too much effort. He no longer could even socialize and found his dog seemed to be the only living thing he could care for although he kept in touch with many by phone displaying a quick wit along with strong advocacy. Ken lived and died in Hamilton, Ontario, Canada and his wise words and honesty are missed by many. (Source: telephone friend)
Oliver Christopher Coles, 30, died 13th March 2012. He was a successful engineering consultant until illness brought him home to be cared for by his family, where he was diagnosed with ME. Oliver’s five year quest for solutions and relief was conducted in a mature, scientific and sensible way. He was determined to find help for this illness and was proactive in supporting others in his online blog. He fought the good life until the burden of pain became too much for him to bear and he took his own life. (Source: family)
Emily Rose Collingridge, died just weeks before her 31st birthday on March 18, 2012, from heart complications. A senstive and shy child in the UK, her class contracted mumps when she was six. As the others returned to playground vigor, she endured multiple symptoms that were bewildering. She would often collapse at school and be bullied and, after she was wheelchair bound by age 14, finally got a diagnosis of M.E. She became active in a charity for children with M.E. and wrote a brochure for them that was a guide to the disability living allowance in her country (England). By age 21, she volunteered for another charity although she was, by then, bedbound. Getting so much more severe, she was hospitalized several times and needed constant care. By her mid-twenties, she had unexpected improvements. She was able to tolerate some light and could take a few steps with a walker. Understanding that "we were helpless in the face of a poorly understood and devastating illness", Emily wrote a book, Severe ME/CFS: A Guide to Living. Her slight improvement was short-lived as she had to be tube-fed and could nothing on her own. In 2008, she was featured in the book, Lost Voices and featured on the website of Stonebird. She leaves her parents and many from the severe ME community who appreciated her courage. (Source: Matthew J. Smith, Stonebird)
Raymond F. Colliton, 68, died January 29th, 2016, from an ongoing exacerbation of viruses encouraged by CFIDS/ME. Ray was recognized as a patient who began an online announcement project, Co-Cure, that welcomed both scientific and political advocacy where patients and researchers were kept informed for decades until he was no longer able to continue. Before CFIDS/ME struck, Ray had developed his own consulting firm for small businesses. He began suffering from CFIDS/ME in 1988. He was hospitalized in late 2015 for bronchitis but only got worse until he was put into the hospice section of the hospital where he died. Ray left his wife, Bernice Melsky, their daughter, Carrie, a brother and two sisters and many other family members along with countless patients who benefited from his work.
Heather Colman-McGill, 38, died in the early fall of 2019 after suffering with ME/CFIDS since her teens. Despite her failing health, she eamed her BA in biology from Bowdoin and her Masters in Enviromnental management from Yale. Heather was a consultant to the UN on climate change and environmental policy. She is missed by family and friends who continue to advocate for ME.
Diane M. Comeau, 49, died in mid-August of 2001. She had just turned 49 in May. Diane was in ICU for 10 days with an abscess in her groin and her body became sepsis. Tests and scans showed nothing. Diane had suffered for most of her life with CFIDS/ME and FMS. She was a Captain in the Civil Air Patrol where she was valued for her dedication. "She gave 100% to cadets," said a relative. A memorial service in Arizona honored her with a fly-by. A close friend remarked that she never let her pain hold her back. Her mother, Barbara Murray, also suffers from this disease. In addition to her parents, Diane left 4 brothers, David, Gary, Stephen, and Richard. Continuing to help others even after death, donations have been requested to go toward research via The National CFIDS Foundation, Inc.
Dawn E. Cook, suffered most of her adult life from CFIDS/ME. She died in December of 2009 at age 50 by her own hand. Dawn, who lived in California, took computer programming in college and worked in the insurance industry until her illness prevented her from continuing. Even while sick, she had ideas that she persued. Dawn was warm and intelligent. She was determined to get better so she tried supplements and many other ways to try to improve her health. Before her death, she had been on the Marshall Protocol hoping, once again, for some improvement. Dawn left friends along with a brother and sister who feel a void in their lives without her. (Source: Todd Cook)
Greg Cooper, died at age 40 of causes unrelated to his CFIDS/ME in March of 2000. Greg leaves a daughter and many members of his support group in California who miss him. He was on an experimental trial of Ampligen but found it was not a help and had adverse effects.
Cynthia Coultier, Female, age unknown. Died 1998 from complications of CFIDS/ME. Tested highly positive to Chlamydia pneumonia but her physician refused suggested treatment for this. Left two sons and grandchildren. Although Cynthia had owned her own business, she was not eligible for any disability. (Source: Support group leader of National CFIDS Foundation.)
Robert Courtney, 48, took his own life on March 7th, 2018 when , his ME, that he had lived with for13 years, worsened. He was known as an ME activist where he welcomed other ME patients to visit him at his home in England where he was housebound and bedridden. One described Bob as being “composed of warmth, wit and kindness:” Many will remember him and miss him. (Source: Phyllis)
Janice M. (Serven) Couture, 79, died on May 8th, 2012 in New Hampshire after a long and courageous battle with CFIDS/ME. Janice was an LPN who worked in private duty as well working at other jobs until her disease forced her to stop working. She went to high school in Chicago but attended nursing school in New Hampshire. While living in Spring Hill, Florida, for more than six years, she founded and led a support group. She was a member of the National CFIDS Foundation since it's founding in 1997. Predeceased by her husbands, Gerard Schoch, George Serven and Martin Couture, she left four children, Sandra, Lorrie, Thomas and Timothy, seven grandchildren and four great grandchildren. She will be remembered and missed by many. (Source, friends & newspaper obituary)
Lily Couvreur, 54, died with medical assistance on 27th March 2009. Lily had suffered with an extremely progressive and severe form of ME for over 18 years. Born in Antwerp (Berchem), Belgium, Lily is missed by many who appreciated the medical professional's help she received at the end. (Source: family member)
Merryn Crofts, 21, died in May of 2017. She had been sick with CFIDS/ME for many years but the last three years of her short life were spent bedbound. She was a beautiful girl that was truly tortured with pain by her disease. Her change tortured her mother and many others as they watched how the disease tormented Merryn. As she worsened with agonizing symptoms, several physicians believed she had something psychological wrong with her. She died weighing just over 80 pounds as more than two bites would make her vomit. Two years before her death, she wrote, “Having severe ME is like trapped in your own body every single day…Spread awareness and all of us and all of those who have lost their lives.” An inquest ruled that she was killed by M.E. (Source: Daily Mail)
Joan Filsinger Crommet, 80, died in late October, 2011. Born in Elmira Heights, NY, Joan went to high school in Philadelphia and attended college in NY and Massachusetts where she was a Magna Cum Laude graduate of Worcester State College. She was a laboratory technician and in pharmaceutical sales in New York as well as a microcomputer consultant for Bentley College in Massachusetts. She loved gardening and, after she was diagnosed with CFIDS/ME, she became active with a state support group. She left her husband, Alfred, of 14 years along with three daughters, two sons, grandchildren and great-grandchildren and a sister when she died of cancer in Worcester, MA. (Source: cousin, obituary)
Connie (Silvio) Cronin, 69, died December 15th, 2011 in Newtonville, MA. Connie was a long-term PWC/ME who attended a support group in Newton and Needham. Before becoming too ill to work, Connie was a nurse in hospitals in Martha’s Vineyard, Newton and Waltham. Her husband, Charles, predeceased her. She left two sons, Christopher and Colin as well as a brother and grandchildren. (Source: fellow support group member)
Amy Haskins Croyder, 57, found peace on November 21st after bravely battling CFS/ME for over thirty years. She is survived by her beloved twins, Logan and Nora Bahns; her mother, three sisters, and her sister-in-law. Amy was tender-hearted, tenacious, a perfectionist. Before becoming ill at age 21, she was a star athlete, a fantastic gymnast and runner. She worked with the intellectually disabled, was a strong writer, and an even better communicator. She was quick to offer support, praise and positivity. There was no one she was unwilling to help. She was a rare combination of true grit and open heart and will be terribly missed. Her smile, her hugs, her laughter will forever be missed by her family and friends.
Gerald Ross Crum, 59, of Carson City, NV, died June 5th, 2008. Born in California, he was a former computer programmer following a stint in the U.S. Navy. Jerry experienced seizures, neurological problems and fatigue in 1986. It took over a year and several physicians to finally get a diagnosis of CFIDS/ME. Jerry was one of the first four patients on the original pilot trial of Ampligen™ and a court order allowed him to stay on the drug longer. He is the third of those first four to be added to this Memorial List. He was an activist for CFIDS/ME until he developed mantle cell lymphoma and tried antivirals and many other regimes until his death. His leaves his wife, Colleen ("Coco"), who stood by him faithfully thoughout his years of suffering, his parents and a brother along with many others who will miss him.
Elizabeth Cuniff, 62, died in 2009. A long-term CFIDS/ME patient, Elizabeth lived in Charlotte, NC. Further information is welcomed.
Andrea Cunnigham, died at aged 46. She had myalgic encephalomyelitis since 1988 and was diagnosed with cancer in early 1997. She died just a few weeks after this last diagnosis. From Wales, UK, Andrea was in touch with sufferers from all over the UK sharing information and support before the internet became popular. Her passing was a huge shock to many of her friends. (Source: Laura Jones)
Nancy Cunningham, a member of the Seacoast NCF Chapter Support Group, died on April 16, 2004, at a hospital in Dover, New Hampshire at age 65. Before getting ME/CFIDS, Nancy had been employed for 30 years at Eastern Air Devices. A native of Maine, Nancy is missed by her husband of 46 years, Percy, two daughters, two granddaughters and a brother as well as her beloved cat and dog.
Judith Curren, 42 year-old female. Died August 1996. Cause of death: Suicide with assistance of Dr. Jack Kevorkian. Occupation: Registered nurse. Left husband, 2 small children. Was totally bedridden, paralyzed on one side. Had a wonderful sense of humor. Husband stopped her first attempt to meet with Dr. Kevorkian but she insisted she did not want to die in a nursing home. Her husband, a physician, had to move out of state following the publicity following her death. They were Massachusetts residents. (Source: personal friend, newspaper articles.)
Stephen S. Czerkas, a long-term patient, took his own life on January 10,1999 to escape the poverty, pain, and legal hassles brought on by this illness. Donald Scott, founder of Common Cause, said Steve's wife had left him as do many partners of patients.
Eileen Donna Maria Dass, 70, died in her sleep on November 3rd, 2009. A valuable member of the Seacoast Support Group, Eileen had a life-long love of music and, after graduating with honors from Ulster County Community College in New York, both played and taught music, including piano, organ, clarinet, flute and saxophone for many years. She move to New Hampshire with her husband, Vasant, where she continued her love of music until a horrific accident with a tractor-trailer in 1999 forced her retirement. Despite getting worse, Eileen remained a cheerful and loving person. She left her husband, her adult children and their families and a large extended family. She touched many lives and all will miss her. (Source: Seacoast Support Group/NCF Leaders of NH/ME).
Skye Dailor, 14 year-old female. Died September 1st, 1990. Cause of death: heart attack caused by lethal dose of pills following taunts by classmates. Her physician, David S. Bell, M.D., FAAP, dedicated his first book in her memory.
Michele Daley, 47, died on Thanksgiving Day, 2018, while hospitalized for full organ failure in Missouri. Born with spina bifida, Michele, later got CFIDS/ME that tormented her life further. Michele was a breast cancer survivor as well as an animal lover and had many cats and a dog as well as a rabbit. Despite being wheelchair bound, she made many friends with others and was as helpful to them as possible. She had formally lived in Sharon and Brockton, MA. (Source: Dave Petrosky)
Janet Dauble, 68, died in January of 2011 of cancer after years of suffering with CFIDS/ME. Janet, from Pasadena, CA, attended many of the earlier medical CFIDS medical conferences 1990's and founded the nonprofit ministry Share, Care & Prayer that is for environmental diseases. She counseled many with prayer. Unfortunately, when surgery was needed, Janet did not inform the anesthesiologist to avoid the sodium channel. She is survived by a brother, Bill, and his family and missed greatly by many. (Source: Share, Care & Prayer)
Maxine Laudan Davi, died in 2010 of cancer after beating it twice previously. Formally an editor for a CFS group newsletter in Chicago where she was born and raised, "Micki" moved to the Colorado mountains hoping it would be better for her health. She suffered from multiple chemical syndrome along with her CFIDS/ME and formed a group to pull weeds beside highways to prevent the necessity of spraying pesticides. She was witty and resourceful. A daughter, Clare, survived her.
Denise De Hoop, 45, died in December of 2012 from cancer that was the culmination of ME. Denise, who was Dutch, suffered for years but all of the physicians at many hospitals she went to felt she was suffering from a psychosomatic illness. She left her husband and two 15 year-old daughters. She said, “My wish is that for a conferenceroom with doctors I can tell my story from A to Z in the hope that they learn something from it” since no physician would take her agony of ME seriously until she was temiinally ill. Her petition for her country to recognize ME is online along with her diary that can be found by Googling her name. An interview with her is also on YouTube.
Mike Delano, 47 year-old male. Died March 14th, 1997. Cause of death: Kidney failure. Occupation: Football and basketball star. (Source: CFIDS/ME support group leader.)
Frances (Gina) Regina DeLoach, died at home on March 13, 2007 after many years of suffering with CFIDS/ME/FMS. Gina was a warm and loving person who went out of her way to try to help others. She worked as a phlebotomist in a laboratory in Tuscaloosa, AL and was would always go out of her way to assist others when possible. Her parents and sister preceded her in her death but her death was noted by many friends who continue to miss her. Gina was in her 60's when she died. (Source: Elaine Katz)
Gayle Orberg DeMille, 70, died in May of 2014 after suffering from CFIDS/ME for many years. A resident of Mountain View, CA, Gayle was born in Wisconsin and loved to travel and sing in her church choir as well as learning about her Finnish heritage. Both her parents and a brother had passed away but she left many relatives and friends including those in her California support group for CFIDS/ME. (Source: Support Group Member)
Jane Dennison, a long-term sufferer of CFIDS/ME, died in 2003 of an overdose. Jane was a resident of Illinois. (Source: Carol Howard, Pres., Chicago CFS Assoc.)
Dorothy J. Diehl, 72, died November 3rd, 2015, after suffering many years with CFIDS/ME. She had formally lived in North Carolina before she moved to Pennsylvania and she spent her last years in a nursing home in that state. Her husband had predeceased her. Dorothy was an avid animal lover. Years before, she was active as a volunteer for several charities including the NCF and even authored a book. Dorothy’s will left one-third of her estate to our charity but the nursing home and state quickly laid claim to that existing money. She left two sons, a sister and brother and one grandson. Her helpfulness and her wonderful sense of humor will be missed by many.
Christian Geoffrey Dietl, Age 50, was killed unexpectedly in a boating accident. Chris suffered with Chronic Fatigue Syndrome for over 10 years. During that decade, he learned how to manage his life through nutrition and rest. He did extensive research to understand the causes of CFIDS and those with similar circumstances. He was inspired by Toby Morrison and others who shared their stories. Chris never complained and was grateful that he learned to cope. He was passionate about educating others so that they could understand his illness. He was a positive person and never lost hope of finding a cure. Chris’s message to those with CFIDS would be that you are not alone — may you find ways to make your days better and have the opportunity to enjoy the simple pleasures in life. (Source: family member)
Susan Kay Drake, Age 52, died on March 13, 2019 after a shortened life of diabetes and CFIDS/ME. A resident of Orlando, Florida, she had friends that described her as loving, generous and vivacious and will miss her greatly as will her mate, Chuck.
Lyn Drysdale, female: Died 1995. (Source: BRAME.)
Lorna Duncan, Died May 99. Had CFIDS/ME and developed Cancer. She was on The Board of Directors for the ME Victoria Association.
Brenda Eades, 57, died in December of 2009. After being missing for a few days, her body was found in a lake area of Virginia by her husband, Butch, and others who had donated their services to search for her after an official search was not successful. Brenda, a mortgage loan officer, had suffered from CFIDS/ME for years and was getting progressively worse. She is survived by two sons, Timothy and Daniel, two grandchildren and her father along with her husband. (Source: Register & Bee, Roanoke, VA, L. Black, MD)
Joan Eddis-Topolski, 88, died January 1st, 2017. Joan was a great athlete and scholar who received a scholarship to University College at the University of Toronto. She became a reporter and broadcaster. She later became an assistant professor at Carleton University and then an information officer for the Canadian government. It was after she had 3 children and earned her MA from the University of Ottawa that she got CFIDS/ME. An advocate, she became president of MESH Ottawa as well as volunteering for other groups. She is missed by many friends along with her relatives. (Source: Phyllis, obituary)
Steven Eddy, 66, died in the early hours of the morning of February 13th, 2021. He lived in Mahomet, Illinois. His sister told a PWME friend that he had been cremated and his ashes would be buried near his mother’s grave in Mt. Olive Cemetary. (Source: Debbie S. in Kemo)
Lauren Michelle Edgar, 28, died days after having liposuction during which she had leg swelling and pain. She had gained a great deal of weight as a CFIDS/ME patient and the cause of death was gangrene. Lauren left her parents, Leila and Edgar as well as grandparents. Her parents have testified at an inquest that they did not want her to undergo liposuction nor did they lend her the $7,000 for the procedure that she secured via a loan. (Source: media)
Blake Edwards, 88, died in mid-December, 2010. The prolific movie director and writer, born in Tulsa, OK, began his career as an actor and became sick in 1983. In 1984, the infectious disease clinic at Stanford University Medical Center diagnosed him with mononucleosis and, when he failed to recover, with Chronic Epstein-Barr Virus (CEBV). He and his wife, actress Julie Andrews, had a fundraiser at the Malibu home for the illness but failed to raise any funds. He donated money to Dr. W. John Martin who claimed he had found a "stealth virus" although Martin was really testing with the ciguatera assay now found to be a biomarker for autoimmune diseases. Edwards was one of the very few famous celebrities who spoke out publicly about having CFIDS/ME. He was known for his "Pink Panther" movies, "Victor/Victoria", "10" and many more. Blake had several remissions. He died of complications of pneumonia leaving his wife, daughters, step-children, grandchildren and great-grandchildren. (Source: various media, Osler's Web)
Elizabeth Egerton, 42, died suddenly on February 7th, 2000, while under anesthesia for a minor operation. Elizabeth had CFIDS/ME for 10 years and is sadly missed by both family and friends. She was a quiet and caring person. (Source: Alison Kennedy.)
Mark Elliot, 62, died in August of 2013. He was visiting in New York when he fell down a flight of stairs and was hospitalized. After two days in the hospital, he died. Decades ago, Mark helped to establish a support group in Hyannis, MA and led it for patients on Cape Cod. He was a quiet and gentle man who had participated in groups opposing war as well as being drafted into the military when he became 18. Before he became a PWC/ME, Mark was put in handcuffs by the FBI for refusing the draft and had a trial in New York where the judge ruled in his favor. In later years, Mark suffered with CFIDS/ME. One brother predeceased him. Mark left his parents and a brother, Bill. (Source: obituary, PWC/ME)
Ceri Evans, died by his own hand in August of 2002 at age 36. Ceri, from Wales, was a socialism activist who participated in many struggles. In 1998, he was diagnosed with an occupational injury followed by a diagnosis of "Chronic Fatigue Syndrome." A combination of anti-depressants were prescribed for his "mental illness." (Source: online memorial)
Dewey Ewing, 69, died in his sleep on March 15, 2017 in Stratford, CT. Dewey was born and grew up in Tennessee. He graduated from the University of Tennessee in Chemical Engineering and enlisted in the Marine Corps during the Vietnam War. After honorable discharge, he moved to New York for a job and met his wife of 43 years, Candace. He is missed by his wife, two children and five grandchildren along with many other family members and friends. (Source: Megan)
Joan C. Ferraro, 73, passed away in early March of 2009 at age 73. Joan was born in Stamford, CT and was a member of the Seacoast Chapter Support Group (Maine and New Hampshire) for many years. Her husband, Anthony, predeceased her and Joan, a longterm CFIDS/ME, had 3 sons, Stephen, Daniel and Patrick Conway along with grandchildren and great grandchildren whom she loved spending time with. Joan will be missed by both family and friends.
Linda Farrin died in 2001 after two decades of having CFIDS/ME. Linda lost much after contracting CFIDS/ME, but continued to fight and began a support group in Massachusetts to try and help others. The cause of death was listed as Primary Pulmonary Hypertension.
Leslie Marcia Felsenstein died on December 28th of 2017 after being sick for decades. She served in Vietnam as a triage nurse. The VA diagnosed her with PTSD but, as she worsened, she was diagnosed with CFIDS/ME. Leslie worked in Senator Kerry’s office and continued work as an anesthesiologist until she could no longer work at all. Her sister, Lois, came to visit her in Massachusetts until she found Leslie so sick that she packed her up and took her to her home in New Jersey. Leslie worsened more until she had to move into a nursing home. Leslie was called “lovely Leslie” by many friends. She is missed by both friends and relatives. (Source: many PWC/MEs)
Patricia Colleene Ferdan, 70, a charter member of the SJ CFIDS/FM since December of 1986, died in January, 2012. Patricia (Pat) was born in Kingfisher, Oklahoma. She entered into rest in California from complications of pneumonia. Pat, a beloved wife and mother, was a Medical Coder for private and government agencies for thirty years. She was instrumental in the formation of the San Joaquin CFIDS/FMS Support Group. She leaves behind her husband, Saul, her son Robert, daughter-in-law Toby , daughter Paula and two grandchildren. Pat enjoyed her church, helping others, sporting events and being with her friends and family. (Source: San Joaquin CFIDS/FM Support Group/CA)
Casey Ryan Fero, died on July 4th, 2005 in his sleep at age 23. An autopsy showed he died of myocarditis, a viral infection of the heart muscle. Casey had CFIDS/ME since the age of nine. He had recently gotten his Associate Degree and was planning on further education as he worked as a shift manager. Casey was the son of Pat and Bruce Fero of Sun Prairie, WI. A kind and gentle person, he also leaves a sister, Mykol Susan, his grandparents, aunts and uncles and many cousins. (Source: Casey's mother)
Linda C. Ferris, 60, died at her Connecticut home in November of 2009. Until 1986, Linda worked in the banking, insurance and medical fields until she was disabled with CFIDS/ME. She was buried in the town where she was born, Torrington. Linda was an intelligent and feisty person with a huge heart who reached out to other people and deserved better health instead of the suffering she was forced to endure. She gave testimony to the federal CFSAC just months before her death that mentioned this Memorial List she has now joined, "They died because the U.S. Government does not care to help…" Linda left her best friend, Sue Lundin, a caring brother and his wife, a favorite nephew and niece and other relatives and many friends who feel a void in their lives without her. (Source:friends)
Joseph Fiducia, M.D.: male, age unknown. Died 1980s by own hand. Gynecologist who began seeing CFIDS/ME patients following his own illness. Voluntary support group leader and advocate.
Maya Erianna Finn, 37, died on August 10th, 2009 at her home in Rancho Cucamonga, CA of complications from CFIDS/ME after a lengthy battle. Born in Upland, CA, Maya was highly intelligent and began her first computer class at the early age of 6. She was sick when attending college but graduated from Loma Linda University with a Bachelors Degree in Medical Recording. She worked at the Betty Ford Clinic and tried bravely to deny the progression of the illness that was stealing her life. She left her parents, Darrell Finn and Sally Warner along with a brother, Sammie, a large extended family and many friends who remembered her as patient, smart and gentle. (Source: family friend)
Sue Firth, The first vice-chair of England's 25% ME Group for severe ME patients, died in May 2008. Although bedridden, Sue wrote articles, appeared on television and raised funds for ME by making cards as well as remaining active in other charitable ventures. She had a wonderful sense of humour and her compassion and strength were an inspiration. Sue left her husband, Mike and two teenaged sons, James and Tom.
Angela Flack died in January of 2007 from an inoperable brain tumor that was discovered just six months prior to her death. "Angie" was a trustee of The ME Association in England and passionate about ME recognition and the injustices that resulted in poor information about the disease. She was a long-term sufferer of ME who coped with the challenge of living by herself with the illness by trying to make a difference in the world of CFIDS/ME. (Source: The ME Association)
Rebecca (Becky) S. Fleig 44, died on October 28th, 2018, after suffering from CFIDS/ME. She was born in Rochester, NY but, when still in school, her family moved to Maine. She loved cooking and was also a wonderful at crafts such as creating beautiful greeting cards. She was outgoing and loved to share with others. She was a member of a support group for CFIDS although her obituary only mentioned fibromyalgia and myasthenia gravis. Her former support group leader, who let us know of her passing, wrote, “At least she is at peace and not pain.” She will be missed by her parents and other relatives as well as many friends who will never forget her. (Source: former support group leader)
Kevin Foley, was in his early 40s and living in Tennessee with CFIDS/ME. He had improved enough to work part-time but did not know alcohol would interfere with his medications. The death of this long-term patient was an unintended consequence.
Dr. Elizabeth “Betty” Margaret Fretz, 69, died in late March of 2018. She was an optometrist who was well known to be very helpful and loved by so many of her patients. She worked and lived in Ontario, Canada. Although one brother predeceased her, she is greatly missed by her three sisters and so many that she taught as well as helped.
Rosy Freudenberg, 60, died of lung cancer in 2011 despite not being a smoker. A resident of Britain, she had suffered with ME for decades and was unable to work for 30 years. A severe patient, her walking was severely limited as was her life. She is greatly missed by her friends and thought of often. (Source: Julia Cameron)
Mag Friel, 64, died on the last day of December in 2017. Mag took her own life after many years of suffering from CFIDS/ME. She was confined to one room and could not tolerate noise or light. Her window blind remained closed. She tried to stay in touch with friends until she could no longer as her pain and other symptoms worsened a great deal. (Source; computer. More information welcomed.)
Kathryn Judith Froese, 66, died in May, 2010 after years of suffering with CFIDS/ME. Kathryn had lost a lot of weight and was hospitalized at the Health Sciences Center in Canada when she lost her battle to live. She had been diagnosed with many illnesses in addition to CFIDS/ME such as Addison's and gastroenteritis. She left her husband, Robert, a son, daughter and grandchildren. Kathryn, an intelligent, courageous and caring person, once said, "Death does not frighten me; I have been sick for a very long time." (Source: friend)
Christine A. Rothfuss Fudge, 46, died July 15th, 2009. Christine, a health care worker, kept trying to find work after contracting Gulf War Syndrome but she kept deteriorating. (Science has yet to find any difference between GWS and CFIDS/ME except that many with GWS deteriorate at a faster rate.) She is survived by her husband, Keith, her brother, sister, brothers and many other family members and friends including a PWC/ME from the Rochester NY area. She is greatly missed by many who treasured her. (Source NY/media)
Ian John Fulton, 38, passed away in June of 2020. He was sick with ME since he was a child. He lived in a small village in the UK with his parents, David and Elizabeth. He was a wonderful friend to many people. He was cremated and the many friends who he had were so sorry to see his life ended so soon. Although he suffered from ME, when others tried to find ways to help him improve, they ended up realizing that there was nothing that would help him. He did find others with ME online that he conversed with. He is missed by members of his family as well as friends.
Maria Furniss, 48, of Silsoe, Bedforshire, UK, took her own life in June of 2012 after suffering for many years with CFIDS/ME. At her inquest in December, her husband, Russell, said, "Her personality was not one to be depressed, she lived life to the full. I think ME is a seriously misunderstood illness and how crippling it can be. The family, the boys and I loved her with all our hearts... she was a very kind and loving mother and wife. She was very, very determined and she really wanted to help and support anyone who was going through the same plight as her." (Source: Bedford Today 12/6/2012)
Christine M. Gaffey, 52, died in the late winter of 2012 after suffering since 1989 with CFIDS/ME. A staunch advocate in Virginia and other states, Christine often testified at CFSAC meetings as an outspoken member of the CAA, talking on the difficulties that patients had to live with as well as the pain of having to convince medical providers of the ligitimacy of the disease when far too many believed it was a psychiatric illness. She joined the CAA for Lobby Day that they used to observe on May 12th. She believed federal funding would help her disease. Chistine left 5 sisters along with her parents who reside in Iowa and many friends that will continue to remember "Christy". (Source: PWC/ME friend)
John Gakingsway, died early in 2000 from complications of CFIDS. John was the founder of a "CFS/Fibro Support Group" on the internet for patients in the state of Georgia. His group, "Peaches," is still going b today. He was forced to move back to Michigan when his condition deteriorated and spent his last Christmas with his granddaughters. (Source: Wife and fellow PWME/C, Karen)
Kim Gallagher, died at the age of 38 from stomach cancer on November 18 of 2001. Kim was a two-time Olympic medalist who began her medalist career in Pennsylvania while in high school. One record in a 1,500 meter race still stands today. She moved to southern California after a year in college to train in Santa Monica and won both a silver and bronze in the Olympic 800 meter race. She suffered from CFIDS/ME and said, "I felt like I was being stabbed in the stomach," after one of her races. She was previously operated on for polycystic ovaries.
Ray Gardner, Male, age unknown. Died 1993. Died from complications of CFIDS/ME. Loving father, husband. (Source: support group leader in Massachusetts.)
Todd Garrison, 41, died on April 8th, 2018 in Byron, Georgia. He was severely affected by ME. He is missed by his mother as well as his grandparents. (More information accepted.)
Cheryl Lynn Gates, 56, of Batavia, New York, died in October of 2016 following a brief battle of pancreatic cancer. She grew up in Batavia but graduated from Northern Arizona University and then moved to California to be a research analyst for an investment firm. She loved adventures as well as animals. Cheryl was fearless in trying out new ventures such as surfboarding or horseback riding. When she returned to Batavia in 1987, she suddenly became very sick although it took quite awhile for a physician to diagnose her with CFIDS/ME. She encouraged many friends, both old and new, and was devoted to her two cats, Quincy and Lucy. She even rescued an injured crow and a ferret and nursed them back to health. She is survived by her father as well as two sisters and their children. They, along with many friends, both human and animal, miss her. (source: fellow PWC)
Nancy Gavel, died on Easter Sunday, 2004 after a long struggle with ME/CFIDS. Nancy was born in Geneva, Ohio in 1941 and died of cancer after just one radiation treatment. Her experiences with physicians who dismissed her complaints made her avoid them as much as possible and she was taken to a hospital by ambulance only when her pain became unbearable. She resided in California. Nancy left a husband of 37 years, Roger, and a daughter, Kate, along with three grandchildren.
Helen Jean Gawthrop, 52, died September 19th, 2007 at home in Athens, Ohio from complications after a multi-year struggle with CFIDS/ME. A cum laude graduate of Marietta College, Helen worked until 1999 for the Ohio University Press. A well-read history buff, Helen loved the outdoors along with thoroughbred horses. Her battle with CFIDS/ME led her to investigate many alternative protocols as well as seeing one of the nation's leading specialists. Helen kept in touch with many other patients via e-mail and telephone and her fellow patients found her to be witty and brave. Her father, Paul, preceded her in death. Helen left her brother, James, and his wife along with her mother, Nancy and many friends and extended family members who miss her dearly. (Source: family member)
Christine Geifing, died in 1996 after a long struggle with CFIDS/ME. (Source: BRAME)
Mildred Gelbloom, 88, died on December 8th, 2015 after years of suffering from CFIDS/ME and, as has been found by National Cancer Institute, ended up dying from a lymphoma/leukemia cancer. Mildred was born in New York where she received a degree from New York University and then lived in Newton, MA where she received a degree from Wheelock College in early childhood education. She went on to direct programs for children in public and religious schools as well as becoming a concert pianist. Mildred’s beloved husband, Gerald, and her son, Stephen predeceased her. A daughter, Mara, along with her sister and other relatives and friends mourn her passing.
Rebecca Genn, 28, died January 11th, 2015, after fiercely fighting against CFIDS/ME since she was a young child. She was found by friends on her apartment floor in Palo Alto, CA. The coroner found her death was from “natural causes”. Rebecca was diagnosed when she was 8 although her mother, Nancy, said she “had known since she was an infant that something was terribly wrong: sleep difficulties, pain, apnea intervals, racing heart, digestive disturbances, disorientation, purple hands and feet.” Rebecca refused to give in to her illness. She attended school and even sporting events even though she had to be carried to the soccer field so she would be able to play. She became a nurse and was studying to be a nurse practitioner although she had to often interrupt her career plans and go on disability due to the severity of her condition. Rebecca is missed by her mother and siblings Jonathan, Eric, Katie and Rachel along with many friends.
Ingeborg Geuijen, 44, passed away on August 26 of 2015 after years of suffering from CFIDS/ME. A severely ill patient from the Netherlands that was young when she was attacked by the illness, she became an inspiration to other advocates with her Facebook postings. She is missed by many who were inspired by her advocacy. (Source: relative on Facebook)
Barbara Ramos Gibson, 63, died on May 1st, 2006 from complications of CFIDS/ME and fibromyalgia. She was active in Florida trying to make a difference in the way the disease was viewed as well as reaching out to others. She had become so severe that she was unable to walk and she was due to enter a nursing home when her life ended. Barbara leaves her daughters, Joan Gunther and Karen Mullins, three stepsons and grandchildren along with many patients who will remember her efforts to help and her kindness. (Source: family member)
Lynn Gilderdale, died on December 4th, 2008. Lynn was a healthy teenager in the UK who enjoyed swimming, sailing and cycling when she was struck by myalgic encephalomyelitis at age 14. The disease left her bedridden, partially paralysed, unable to talk or drink along with acute cognition problems and horrific pain. She leaves her mother, Kay, who was an advocate for ME and her father Richard, both who cared for her. One journalist who wrote a story about Lynn said “I have seen African children suffering from starvation, met people dying of AIDS, patients paralysed from the neck down, others in the last stages of terminal cancer, but I had never seen a living person as desperately ill as Lynn Gilderdale.”
Anna Glynn, died May 19, 2011 in Galway, Ireland. As the newspaper announced, " tragically, after twelve years suffering from Fibromyalgia and M.E., dearly loved daughter of Esther (née Colleran) and the late Patsy; sadly missed by her loving mother, brothers Gerald and David, sister Catherine, boyfriend Paul. (Source: Irish Times)
Barbara Gove, female in early 40s. Died 1994 at Framingham, MA hospital. Cause of death: atypical pneumonia usually seen in AIDS. (Source: Support group leader.)
Ron Graves, 70, died in 2015 after suffering since he was only a two year old living in a poor section of Manchester in England. At that time he was diagnosed with both whooping cough and measles damaging his lungs. When other children got a simple cold, Ron got bronchitis. Ron’s father died when Ron was just 12 so Ron began working at age 15 despite his ongoing health problems. He lost all but two of his jobs due to poor health until he finally received disability benefits yet all who knew him could recognize his high intelligence. Ron loved nature and outdoor activities. Although he was diagnosed with many illnesses, such as COPD and Addison’s, his lymphodema and cellulitis and other physical problems clearly put him in the CFIDS/ME category. He blogged and tweeted on the computer with his “rantsfromron” and even received an award for Top Health Blogger. He is missed by so many who always looked forward to his daily messages. (Source: other patients and Ron’s own writings)
Myra Gray, Goodman: female, died February 4st, 1995. Was a feature writer for Boston Herald, support group leader in Vermont. Died of heart complications due to CFIDS/ME. (Source: husband, Lee Dana Goodman.)
Candy Graham, a long-term patient of CFIDS/ME, died of complications of the disease in 2003. Candy was from Fairfield, CA. (Source: Carol Howard, Support Group Leader)
Lorene Sutton Gray, died early in January, 2005 at a Oconee Memorial Hospital in Georgia. The autopsy report reported four main reasons for death including "CFS" which may be a first in this country. Lorene became ill in 1983 but worsened after breast implants and removal. After many misdiagnoses, she was finally diagnosed with ME/CFIDS/FM. Lorene was an ardent advocate for those women with breast implants. A native of Tennessee, she is survived by her husband, John, who remained a devoted caregiver as she worsened, her mother, a daughter, Lisa Morris, two brothers and a sister as well as a grandson. Her son, Randy, preceded her own death. Her husband, John, donated samples following her death to researchers funded by the National CFIDS Foundation to help further research. A long and thorough autopsy found her death was from shock, acute renal failure, a breakdown of muscle fibers known as rhabdomyloysis, and "chronic fatigue syndrome/fibromyalgia" as well as finding major damage to many organs and a lymphatic completely unable to operate. Her husband's willingness to share the information after Lorene's death will bring answers to this illness that were formally unavailable. In death, Lorene may well have provided so much more help due to the devotion of those who survived her and her own motivation to help others which had so impressed all that knew her. (Source: support group leader)
Kathy Greaves, died on May 7th, 2016. Borm in Oklahoma, she grew up in Kansas but returned to attend the University of Oklahoma where she earned her BS in Education. She taught school in Missouri and Florida and then in Texas where, when her CFIDS had progressed, she became a homebound teacher. Her husband of 54 years preceded her in death as did a brother. A son and two granddaughters mourm her as do many others. (Source: relative and El Paso Times)
Emily Gregg, 34, died by her own hand in November, 2014. She was a former police officer in Portsmouth, England who, experiencing severe pain on her 33rd birthday, was unable to use her legs. A clinic in London diagnosed her with a name the British have adopted from our own Centers for Disease Control, and Emily, with a diagnosis of “chronic fatigue syndrome”, had to move in with her father. A year later, Emily found she was in paralysis from her neck down. Her father asked for a nursing help while Emily remained mostly bedbound and unable to sleep. Her local physician put her on a waiting list for a London clinic. When her father looked it up, he found it was a locked clinic for the mentally ill. Months later, she hung herself. She left her father, Phil, and her mother, Susan. (Source: Chichester Observer)
Mrs. Joseph Griggs, female, age/date of death unknown. Cause of death: toxoplasmosis and bacterial infection of brain. (Source: letter.)
Terry Lynn Grise, DVM, 61, died in September of 2016 after a long battle with CFIDS/ME. Terry was known for her humor and determination. She knew she wanted to be a veterinarian. Born in Vancouver (Canada), she earned her doctorate at the University of Saskatchewan and went on to earn her veterinarian degree to open a practice in Richmond where she demonstrated compassion and care. She had many pets of her own and actively loved horseback riding, skiing, scuba-diving, singing, hiking and dancing along with gardening but illness came and prevented her from most of them. Married for 16 years, she soon became dependant on her husband’s care and companionship. She is missed by her loving husband, Lorne Carney as well as a stepson, her parents, two sisters and other relatives and many friends. (source: several PWCs)
Linda Grommes, 54, died of CFIDS/ME on August 1st, 2007 in Fountain Hills, AZ. For 31 years, since contracting what seemed like the flu that wouldn't go away, Linda was forced to give up many things but remained hopeful. Linda earned her BS degree and was the class valedictorian. A former systems analyst for the Upjohn Company in Kalamazoo, MI, Linda found a new avocation after she became sick and bred and raised Shetland Sheepdogs transcending the disease again and again. When a further decline in her health forced her to give that up, she found other ways to enjoy life and remained hopeful, trying experimental treatments and being an online contributor to a group. She was nearly bed-bound during her last five years of life and suffered greatly, but continued to inspire hope in all around her. Linda leaves her husband, Bob, her mother and two adult stepchildren. (Source: Bob Grommes)
Cecile Gross, 95, died in December of 2017 in Florida where she was living in an assisted living community. Originally from Texas, she grew up next to acres of land used by the U.S. Government for testing atomic weaponry where no regular citizen had access. She gradually got worse through the years and was sure her daughter, although never diagnosed with CFIDS/ME, was also a victim of this disease. Cecile was a member of the NCF since its inception and will be missed by many whom she kept in touch with along with others.
Irma Gross, 81, died in early August of 2010 in Cleveland, Ohio. Irma formally resided in Florida and Connecticut and was born in NY. She graduated summa cum laude from Brooklyn College and got her master's degree from the University of Hartford. She was a teacher and an active volunteer for many organizations. She left two sons, Mark Shoag, M.D. and Eric Shaog along with a brother and sisters. A long-term CFIDS/ME patient, she donated to the NCF to help fund research. A nephew Rabbi Cary Friedman, officiated at ther funeral in Connecticut. She is remembered by many as a warm, quiet and loving person. (Source: PWC/ME)
Freda Grossman, 86, from Southfield, Michigan, passed away on September 29th, 2019. Freda's husband, Carl, predeceased her as well as her son, Randy and many siblings. She is survived by two children and one sibling as Well as grandchildren and many other relatives who will miss her. A graveside service was held for her although her many years of suffering from ME/CFIDS was not mentioned. (Source: Kathy C.)
Janeen Guidry, female, about 50 years-old. Died 1994 of causes unknown. (Source: letter from family member.)
Keshan Gunawardena, 13, and his mother, Dinesha, 45, both died of an overdose of a prescribed drug in April of 2001. Dinesha was an accountant for British Airways before she became ill with CFIDS/ME. Keshan was a student at England’s Eton where he was considered to be a brilliant scholar who had won a scholarship the previous year. Dinesha and her husband came from Sri Lanka in the 1970’s. He was a physician and the director of a clinical research company. A British tabloid, The Guardian, attributed her action to depression.
Natalie D. Haberman, 79, from Natick, MA and Wellesley Hills, MA, died on May 3rd of 2014 after a very long battle with CFIDS/ME. Her husband, Alan, tried to have medical personnel help her to no avail. He predeceased her. Natalie was an animal lover and was especiall devoted to her dogs. She had two children as well as grandchildren. As her cognitive problems heightened, she was thought to have Alzheimer's although none could account for the times, daily, when she was fully coherent and aware. She felt she had little understanding of her illness and progress was far too slow in unraveling the complex disease. (Source: fellow PWC)
Charles Thomas Halder, 72 year-old male. Date and cause of death unknown. Long-term patient. (Source: family member.)
Jonathan Anthony Hales, 48, took his own life after being bedridden with ME, having suffered from it for 30 years, on November 5th, 2013. Jonathan left notes to emergency personnel to warn them of where they would find his body in Bracknell, Berkshire after meticulously taking drugs that are used for euthanasia. His general practitionar, Dr. Martin Kittel, had taken over his care from a previous doctor and said Jonathan was "The worst ME sufferer I have ever met" and had hundreds of telephone and email conversations with him. His parents reported he had "contracted a severe form of chronic fatigue syndrome" leading to "weakness, pain, depression and isolation" while a teenager who loved art, sports and gardening, although his mother thought he had "a degree of autism" and spent time in a ward that could not diagnose it. He left his parents who hope for better knowledge and more support for patients in the future. (Source: UK Daily Mail)
Evert Lee Hancock, died in November 2009 at home at age 64. He had battled CFIDS/ME for many years. He studied accounting at college and enjoyed dancing, remodeling and building houses, gardening and antiques. Evert was a member of the West Michigan CFS Support Group until he moved to Cadillac, MI where he founded a support group there to help others cope with CFIDS/ME. He left his life partner of 31 years, Douglas Ashworth, his daughter, Toni, his son, Christopher, his ex-wife, Nancy, two sisters and many friends and relatives who will continue to miss him. (Source: W. MI SG)
Paul Hancock, died in February, 2013 which was his birthday. A native of Brazil, he had been in training as a psychotherapist when he was diagnosed with CFIDS/ME in 1998 when he was no longer able to work. An inquest was held that found that "he died of heart failure and malnutrition" in his home in Wood Green. The coroner believed "he had died of natural causes" although weight loss is often seen when the illness progresses and the heart, science has proven, is one of the main targets and is seen in 1/3 of our Memorial List. (Source: UK's Haringey Independent)
Jean Hardy, female, mid-50s, cause of death: suicide citing disability and pain. (Source: CFIDS/ME support group leader and friend.)
Tracy Lynn Harmon, 36, died in 2004 in Ashville, North Carolina, after years of mistreatment and abuse by mental health professionals. When in third grade, Tracy was diagnosed with a mental illness and was put on medications that were not needed. Although she was finally diagnosed correctly, when a teenager, with CFIDS/ME as well as FMS, she continued to be treated by those in the mental health field who insisted that her mother was a problem (Maunchausen's-by-proxie). Due to multiple absences, she was thrown out of school at age 16. The medication the mental health practitioners had her taking would cause her to hallucinate but when Tracey was too tired to get up early in the morning for breakfast while at a mental institution, she would be punished. They convinced Tracy that, without the medications given to her for a mental illness, she would die. She continued to take the medication while living with her mother until she died. Tracy was the daughter of Nancy and the late Louis Harmon and left a younger brother, Lee. (Source: family)
Robert Duane Harrington, 58, took his own life on January 14 of 2006 after nearly 30 years of severe CFIDS/ME. Bob was a vocal advocate of his disease and never hesitated to voice his opinion. He had friends from around the world via the internet as people appreciated his maturity, compassion and sensitivity. A member of The National CFIDS Foundation, he was hopeful that research would help the many millions suffering and celebrated our achievements via funding research. Bob's mother suffered from the same illness. Just a week before he was to be remarried in his 20's, Bob, an executive with Proctor and Gamble, had symptoms that made him think he had a brain tumor. When that proved wrong, Bob married but found he had to change his working habits until he finally worsened to the point where he could no longer work. Sensitivities, especially problems with mold, proved to be so incapacitating to Bob in his last years, that he was desperate to find a mold-free environment he could afford to live in. Born in Washington, he lived in Texas and Oklahoma. Bob fought for so long to find relief but became progressively worse. He will be missed by a multitude of friends along with his five children and nine grandchildren.
Anne Debaillon Harris, 54. Passed away June 1st, 2009, in the Air France Flight 477 crash. A Cajun therapist who was an angel to PWC/MEs as well as active in the Acadiana CFIDS (Louisiana) group, Anne had a sweet and vibrant personality and will be missed by so many in the CFIDS/ME world. Anne was on the flight with her husband, "Butch", who also perished. She left a son and daughter, her father and 5 siblings. (Source: LA support group)
Margaret Hay, died of complications from CFIDS/ME in 2003. Margaret was from Australia. (Source: ACT CFIDS/ME Society)
Oddrun Hekland, died in May of 2011 at age 68. Oddrun was born in Norway. She first felt symptoms of CFIDS/ME when she was a young adult in 1968 but wasn't diagnosed until she was 50. Oddrun, of Spotsylvaia, VA, had a wonderful sense of humor and was active in a support group in the northern part of her state. She found the pain and other symptoms of her disease unrelenting. Her children, Lars and Larisa, were by her side when she passed. (Source: friend, Free Lance Star newspaper, relative)
Simon Helmfrid, 23, from Germany, died in September of 2018. Despite his young age, he had fought a very severe case of CFIDS/ME for many, many years. Further information is Welcomed about Simon.
Lara Henderson, passed away on November 2nd, 2017, at the age of 43. Lara is survived by her husband, Jay, and her son Alex. Other survivors are her parents Michael and Frances George along with a brother and his wife and children and even her grandfather Wallace Prewitt. She was active with an ME group and lived in Chattanooga, Tennessee. (Source: Phyllis, newspaper announcement)
Thomas Michael Hennessy, Jr., 59, died in September of 2013 by his own hand. Tom got sick with CFIDS/ME in the 1980's after eating "tainted raw oysters." Despite trying to continue working as an advertising executive, he became bedridden. At a conference in San Francisco, he gave speech that, as was Tom's style, didn't mince words, as he said, "We are sick, often deathly ill and we are NOT fatigued… change the God Damn Name!" Tom continued his drive to have the U.S. government name of "chronic fatigue syndrome" changed until the government asked the CFIDS Association to form a committee about the name change. They refused to include him and all other advocates and, later, worked to "brand" the name of CFS. He was our first and, certainly, best advocate. Tom, meanwhile, had urged everyone to have official Awareness Day on May 12th. The DHHS of the US government changed the date but most have ignored them as May 12th became internationally observed. In 1997, the National CFIDS Foundation joined the Medical Professionals with CFIDS and Tom's group of RESCIND (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases) to request the U.S. make the date official but a presidential aide turned this down, confusing the name with merely being tired. Tom, meanwhile, began a petition online, along with the NCF, imploring the government to recognize ME. It was still online with thousands and thousands of signatures when our CDC responded by eliminating the term of "myalgic encephalomyelitis" from their diagnostic code. Tom was critically injured in an automobile accident in 2009 and was in a nursing home after being hospitalized. The NCF raised funds to help the first and most determined advocate but our government has continued to ignore or not mention all the replicated science to date. Tom left his mother, Kate, two sisters and four brothers and their families. His father predeceased him. Tom's relentless advocacy, despite his excruciating pain, will be missed by patients and friends worldwide. (Source: numerous PWC/MEs)
Janis (Jan) Henning died September 3rd, 2007 at age 57 at home in Lincoln, Nebraska. She had suffered from ME/CFIDS for over 15 years. She had cancer for 2 years which was cured with chemotherapy. Her ME continued relentlessly, however, and the cancer returned with a vengence that involved every system of her body. Her husband, John, said, "The disease just got the best of her." She was a wonderful, empathetic friend with a positive and witty outlook on life. She never accepted the "F" label (chronic "fatigue" syndrome) and referred to her disease as myalgic encephalomyelitis (ME). Her body has been donated to the University in Nebraska at her request. Survivors include her husband, a son, Scott, a daughter-in-law and one grandson. (Source: a close friend)
Jhan Hiber, 53, died on October 4th, 2000 by his own hand in Anchorage, Alaska, after receiving news of his declining health. John moved, as a child, to Alaska. He had epilepsy since birth, developed rheumatoid arthritis and CFIDS/ME and, in the 90s was diagnosed with fibromyalgia and amyotrophic lateral sclerosis (Lou Gehrig's disease). He was participating in experimental treatments after spending two decades in radio and television media, primarily in sports broadcasting. Living in Carmel, CA seeking treatment and unable to work since 1991, he was attending a media convention in Alaska. He is survived by his brother, Tom Bowles, sister Barbara Stuart, and son David Gohrband. (Source: Kathleen Houghton)
Jenny Hill, died in April, 2007, at age 24 in Australia. According to The Sydney Morning Herald, "A bout of flu progressed into headaches and exceptional tiredness, and by the next year, with no resolution in sight, she was referred to a psychiatrist. Three years later a leading immunologist still thought she was having trouble re-entering normal life after being knocked around by a virus. He rescribed gradually increasing exercise — a controversial therapy for people with presumed chronic fatigue syndrome — and a self-help book." Two weeks before her death, her diagnosis of "metochondrial neurogastointestinal encephalomyopathy" was confirmed. Her own words were spoken at her funeral: "It is not much wonder sufferers become depressed when they see the whole world passing them by. Life is going on without them. it is like trying to catch as escalator that is just beyond reach."
Scott Randall Hinkel, 54, died on the first of June, 2014, after suffering far too much and far too long from CFIDS/ME. Scott grew up in West Linn, Oregon and graduated from Oregon State to become a successful accountant. He enjoyed the beach, playing the piano and spending time with his friends and his family. Being able to help others made him especially happy. Scott was a long time member of the NCF and he left his parents along with two sisters and an uncle. He was diagnosed with lymphoma just a month before he passed away. He gave and received a lot of love and compassion and continues to be greatly missed by both friends and family members. (Source: obituary and family)
Betty Ann Hirschfeld, female, 43 years-old. Died July 24th, 1989. Long term patient. Cause of death: took her own life. (Source: family member.)
Matthew Hodding, 20, took his own life in 2006 after suffering acutely with CFIDS/ME for over half his short life. His father told the coroner's office that his son believed in reincarnation and he "was seeking a new life. Matthew suffered from extreme pain in addition to numerous other symptoms and social isolation. (Source: East Anglian Daily Times, England)
Susan Hodge, Female: age, date, and cause of death unknown.
Ellie Holbrook, a theatre nurse of Bideford, North Devon in the UK died in 1992 of complications due to ME. Mrs. Holbrook was severely ill and bed bound due to the illness for some years. (Source: Devon ME Assoc. PWME)
Lisa Hole, 33, died by her own hand by ingesting an overdose in 2012. Her partner of 15 years took his own life a year later. Lisa had been diagnosed with ME in England and had been bed bound and used a wheelchair. She had been severely ill for a long time. Her inquest revealed she had left a suicide note and had persuaded her partner to respect her wishes. Lisa left a family who believed she had Lyme Disease. (Source: Oxford Mail, UK)
Sharon Horejs, R.N., died while battling pneumonia brought on by chemotherapy for cancer while in a hospital in late 2002. Sharon was a beacon of hope for hundreds and hundreds of patients in southern California who got her newsletter for decades. She was highly intelligent and shared her knowledge freely and openly. Sharon, from Laguna Niguel, California, left her husband, Dennis.
Shauna Bateman Horne, 53, died on May 1st, 2001 from complications from a stem cell transplant. She had CFIDS/ME for 15 years including a bout of breast cancer. She was diagnosed with lymphoma when she tried the stem cell transplant. Born in Wisconsin, Shauma lived in Utah for many years. She left her husband, Richard, whom she met in college, two sons and two daughters and a grandchild, her parents, brothers and sisters.
Eva Horton, died August 30th, 2002, of complications of CFIDS/ME. Eva was one of the founding members of the Greensboro, NC, Support Group and will be remembered by the many patients she reached out to with CFIDS/ME. Before becoming disabled, Eva worked in advertising for one of the nation's major furniture groups. She once told a fellow patient that she had "cried all the tears out of her … she didn't know if she had any more left." She endured all the pain, disbelief, abandonment, suffering and agony this disease brings with it but she endured for many years. She leaves a daughter, Amber, and many beloved friends who hope she has reached a place where there is no more suffering. (Source: Support Group Friend)
Ross Houghton, 29, died by his own hand in the UK in 2011 after suffering for eight years with CFIDS/ME. His brother, Alistair, and his brother-in-law, Richard Knight, were so distressed that they began to fundraise for the disease following Ross's demise, just as Ross had done before his own death when he approached others that had attended Winchester College with him. (Source: CFS Research Foundation Newsletter, UK)
Billy E. Hughes, Jr., 57, died in December of 2005 after suffering for decades from CFIDS/ME. Billy’s father was a stunt man in films and Billy appeared in many films, beginning when he was a child, before he became too sick to work. His first film appearance was Ole Rex. He also was in many television shows including Lassie, The Law and Mister Jones, Gun Smoke, 77 Sunset Strip and The Twilight Zone. He belonged to a group that fights for better working conditions for child actors called A Minor Consideration. Bill had a wonderful sense of humor along with being known for his kindness. He left his wife, Aida, and a son and grandchildren, his mother and a sister and three brothers. (Souce: Fellow California PWC/ME who knew Billy )
Michael Hunt, 16, was a talented soccer player who was unable to play due to M.E. He fell from a bridge and was hit by a train. Michael had recovered and was able to play his favorite sport once more when he relapsed again. Michael was from England and his young life was ended in October of 1998. (Source: CAME)
Alison Hunter, struggled with many years as a child with CFIDS/ME in Australia. She died at age 19 of complications of the disease. A foundation was named in her memory. Allie's dream was that every young person with CFIDS/ME would not be alone. A section of The National Forum is called "Allie's Garden" for news of young people with CFIDS/ME.
Telbert C. Hutchison, 60 year-old male. Died March 16th, 1997. Cause of death: Mitral valve prolapse as consequence of long-term CFIDS/ME. Occupation: photographer. (Source: family member.)
L. LeAnne Hyneman, 43, died July 11th, 2007 of cardiac arrest in Georgia after a difficult 20 year battle with CFIDS/ME. LeAnne was a beautiful, intelligent and "courageous beyond words" person who never complained. After graduating from the University of Georgia, she worked as a paralegal for a year before becoming sick. She was a 1990 participant in the Ampligen trial under the direction of Paul Cheney, M.D. and was rediagnosed with multiple sclerosis near the very end of her life. Her last years saw frequent hospitalizations, a trial on an MS drug that brought on seizures, and even had her teeth break off at the gumline. LeAnne remained hopeful until the end and is missed by her mother, Pat, whom she lived with after becoming ill, a brother, sister and many other relatives and friends. (Source: mother)
Roger Ice died of complications of CFIDS/ME in 2003 in Galt, CA after suffering for many years. Roger left a wife. (Source: Support Group Leader)
Chardale Dotson Irvine, 54, died on February 22nd, 2015, in Arizona, taking her own life with prescription medication after suffering with M.E. for over 20 years. Her husband of 12 years now has M.E. as well. Chardale was born in Provo Utah, attended high school in Lyman Wyoming and later moved to Colorado to work for the US Forest Service in the Boulder Ranger District.” She is survived by her husband, Walter, two sons and a daughter, two stepchildren and seven grandchildren. Her parents and a brother preceded her death. Chardale’s graveside memorial, in Utah, states, “Taken by Myalgic Encephalomyelitis.” (Source: Walter Irvine)
Joan Luther Irvine: 49 year-old female. Died September 5th, 1996 in Senoma, AZ. A nine year survivor of CFIDS/ME. Cause of death: complications of CFIDS/ME by an overdose of a prescription medicine to which she knowingly was allergic. Ms. Irvine wrote her own obituary, citing "CFIDS complications" as the cause. She also wrote, "I have no qualms about the quality and wonderment and beauty of my life. I had the best of lives -- a good, active, and productive life for 41 years. Who could ask for more? Lover of truth and humankind, of all living things. Avid hiker, backpacker, tennis player, swimmer, and walker." She wrote letter she received from CDC warning against donating blood but a national group refused to publicize the letter. (Source: The Desert Sun, Oct. 5, 1996 and e-mail written before her death.)
Thomas Jarrett, 39, took his own life on July 22nd of 2016 when, after a decade of suffering CFIDS/ME, he became bedridden. Before the illness struck, Tom was a certified financial planner and loved backpacking, fishing and sports. He leaves his father, Paul, his wife, Christine, and two young sons, Austin and Andrew along with seven siblings. Tom was an advocate who wanted the government to be more active in researching ME. (Source: fellow PWC, obituary)
Joy Jefferson, female in 40s. Died October 1997. Tested extremely high to Chlamydia pneumonia but lost her valiant battle with CFIDS/ME. She left a husband and many friends in New Mexico who described her as brilliant and caring. (Source: friend.)
Alan J. Jenkins, died on March 30th, 1998 at age 25 from complications of CFIDS/ME. Alan, from Filkirk in Scotland, was remembered by a friend as "a lovely light that never got the chance to shine." (Source: friend)
Linda Jenkins, 42 year-old female. Died April 20th, 1996. Cause of death: heart attack. Death attributed to complications from CFIDS/ME. (Source: support group leader.)
Denise Jerry, Female in forties. Date of death unknown. Cause of death: heart attack attributed to CFIDS/ME. Co-leader of Massachusetts support group, founder and leader of Plattsburg CFIDS group. (Source: phone call from support group member.)
Brynmor Thomas John, 55, was a Member of the United Kingdom's Parliament (MP) when he collapsed and died as he was leaving the House of Commons gym in 1988 after following an exercise regime he was advised would help him with ME. He had an 18 year career with the House of Commons, retaining his seat the year before he died with a huge majority in south Wales for a seat he first won in 1970. Prior to that, he had served as Undersecretary in the Ministry of Defense as well as Minister of State. He said, "Though there is a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it."He had found any slight exertion made him worse and took him days to recover. (Sources: Prof. Malcolm Hooper: "Magical Medicine: How to Make a Disease Disappear", New York Times)
Nancy Johnson, 62, died on Mother's Day, 2001, after decades of battling CFIDS/ME with dignity and courage. Nancy was diagnosed in1986 and spent years trying to help others. She was a support group leader in North Carolina who put out a newsletter and worked tirelessly advocating for the illness. She was helped and supported by her husband, Ralph, who remained a constant caregiver and supporter. Less than three years ago, she was diagnosed with lung cancer. Wrote a friend, "Sometimes her chemo and cancer pain screamed louder than her CFIDS/ME but it was always there. On the days when most cancer patients would have been able to get out or feel better, Nancy had the double duty of then dealing with her ME." In her husband's words, Nancy was "a very special person." In addition to her husband, Nancy was survived by adult children.
Patrick Selby Johnson, 48, suffered for years until his death on December 29th, 2020. He was born and lived in Canada where his intelligence was recognized as a child when he took apart toys and reassembled them out of curiosity. After a trip overseas in his 20’s, he worked as a computer programmer and designer of web pages and displayed his artistic talents in many ways until CFIDS/ME no longer allowed him to work. Pat gave technical support to those on Phoenix Rising as well as friendship to the members. He is remembered and missed by so many whom he helped as well as by his family and friends.
Mary P. Johnston (Keegan), 85, died on December 27th, 2016, in Norwood, Massachusetts. Her husband, Andrew, predeceased her but had spent years driving her to a support group where she met many others with CFIDS/ME. Mary and Andy had two sons and two daughters although one daughter preceded her in death. She also had grandchildren and great-grandchildren as well as many other relatives. Mary was a beautiful, intelligent and warm woman despite her physician refusing to believe anything about her illness that had been scientifically proven. She was a member of the NCF since the charity’s beginning and helped in many ways. She will be remembered and will continue to be missed by many. (Source: Boston Herald, PWC/ME friend)
Gareth Jones-Roberts Jr, 48, died in February of 2009 in the Australian wildfires. He had recently moved back home to be with his parents when his CFIDS/ME worsened. Gareth had gone to town after the loss of power to get fuel to operate a water pump. A firewall forced his car off the road as he was returning, taking his life. Gareth was an inventor who loved biking. He left his parents, Gareth (snr) and Norma. (Source: Herald Sun)
Ada R. Jordan, 65, of Belton, SC, died in April after suffering for many years with CFIDS/ME. Ada was predeceased by a daughter, Teri Lanee Malone and left her son, Tony Malone, a brother and a grandchild. Ada kept in touch with other patients from her support group and died at home. (Source: friend)
Nancy M. Kaiser, 72, a longtime resident of New Mexico, passed away on June 15, 2008 due to complications of CFIDS/ME. Nancy was a golf enthusiast who was a homemaker and volunteer before she became disabled with CFIDS/ME. She spent years battling this illness on the front lines and was well known thoughout the world community of patients having been written up in Osler's Web, Newsweek, and Reader's Digest as "Patient 00", the first patient to be on the experimental drug, Ampligen. For years, she offered to speak to any patient contemplating going on Ampligen and telling them the truth that the drug, for the final years she was on it until she opted to go off of it, created many more problems than it helped. She asked the manufacturer, Hemispherx BioPharma, do a longterm followup on the drug, but they didn't respond. Nancy was a staunch advocate for CFIDS/ME, was interviewed by MSNBC and spoke at many conferences to educate physicians and formed many friendships within the CFIDS/ME community. She was an essential volunteer for the National CFIDS Foundation and all contributions after her death were directed to go toward research via that charity. Nancy is survived by her husband, James A. Kaiser and three children, Laurie Crnkovich and her husband Greg, James M. Kaiser and Deanna Ochoa and David Kaiser and his wife, Peggy as well as two grandsons.
Theodore Samuel “Teddy” Katz, died on New Year’s Day of 2021 after suffering for over 15 years from cancer following CFIDS/ME. His obituary, from the Tuscaloosa News, stated that “Teddy was literally hell on wheels when he was young, nicknamed ‘Hot Rod Teddy’ for his love of rebuilding and drag racing cars as a teenager.” Teddy loved music and learned to play the drums in high school. He went to the University of Alabama and became a DJ at the radio station there. He was a local sales manager for a radio station but soon became the General Manager of five iHeart radio stations. In 2011, his University named him an “Outstanding Alumni.” He married Lisa just a year later. He worked until he was no longer able to due to his illness. Joining Lisa in grief was his mother, Dr. Elaine Katz, his siblings, nieces, and nephews.
Dorothy Kayner, female, died 1998 of cancer. An active advocate until she was too ill to participate. (Source: Chicago support group newsletter.)
Kathleen Kelly, Female, age unknown. Died Mar 1996 from suicide. In a note, she wrote that she died from CFIDS/ME. "I can't go anywhere and don't have a moment free of pain. I'm not so much depressed as I am angry because the medical profession is too wrapped up in saving money (rather than) people." (Source: CFIDS support group newsletter.)
Patrick Wylie Kelly, 42, took his own life in April of 2012. Born in Minneapolis, Patrick graduated Phi Beta Kappa from Macalester College. Warm. outgoing and creative, he was a musician, an artist and a writer who did graphic design and copywriting after moving to New York City. He had been on the Jacob Teitelbaum, M.D. protocol and tried yoga and meditaion and other "self-help" methods after being victimized by CFIDS/ME for 17 years. Patrick is missed by many including his father, Thomas, his sisters Kerry and Kate and a brother, Thomas. (Source: Star Tribune, 4/22/12)
Anne Marie Kennedy, 40s female. Died August 1998 "after a long bout with breast cancer and bone cancer and chronic fatigue syndrome (CFS). Ann Marie had taught French, English, and general studies for many years in Massachusetts and Ohio. She was an accomplished pianist and was also known for her talents as a painter and sketch artist. A friend wrote: "There are no words to describe her long and valiant struggle, nor the courage and commitment of her mother…I'll always remember Ann Marie… confined to a wheelchair, but beautiful and golden and ethereal and charming…" (Source: Boston College Alum notes.)
Zoe Marie Kessler, 63, died Monday, March 21st, 2016 while in hospice. She was from Concord, North Carolioa. Zoe was a talented crafter who cross-stitched, painted, made glass beads and decorated wreaths, picture frames and more. Her family always came first and she especially loved spending time with her two grandchildren. A sister, Sarah, along with her parents preceded her in death. Others who were left to mourn her were her husband, Del, sons Andy and Justin, her two grandchildren and a sister, Ann Workman along with many other friends. (Source: Friend)
Amy Kesteven, 27, took her own life in November of 2018 after suffering with CFIDS/ME for nearly 20 years in England. Her mother, Katherine Ford, also had the illness. Amy had researched her disease and tried vitamins and supplements. She leaves her younger brother who found her drowned in her tub. A coroner said, “Amy reached the end of her tether.”
Molly Keyohara, from Albuquerque, NM. Molly was in a trial for Ampligen for her CFIDS/ME. Further information about Molly is welcomed.
David Killingbeck, Male, age unknown. Died September 1996. Had CFIDS/ME for 9 years. Died from complications of CFIDS in Victoria, Australia. (Source: letter.)
Pamela Sue King, 62, died suddenly on May 13th, 2005, at her home. Pamela had been disabled for about 5 years. A former cook at a dormitory at the University of the Pacific in Stockton, CA, Pam was a mother and grandmother. She was a member of the San Joaquin ME/FMSSupport Network in Woodbridge, CA. (Source: support group)
Sharon F. Kirk, Ph.D., 50, died suddenly on March 3rd, 2009, while walking her beloved dog, Sammy. Dr. Kirk was a long-time sufferer of CFIDS/ME. She taught at LaSalle University and worked in private practice counseling chronically ill patients. She wrote a book about "CFS" and has had a Memorial Fund in Pennsylvania established in her name to support those who suffer from CFIDS/ME.
Robert Klamer, 48, from the UK, died of the complication of ME, pneumonia, in the first years of this century after suffering from the disease for 17 years. Robert was bedridden for the last decade of his life. He could not tolerate light, could not speak nor swallow solid food, and had no bowel function without the aid of enemas and yet remained cheerful. A former social worker, he was still trying to get his Disability Living Allowance restored when his death occurred. (Source: fellow ME patient and friend, Julia)
Roel Klieverol, 40, died in 2019 from CFIDS/ME. Further information is welcomed about Roel.
Nicholas Joseph Aiken Klonoski, 29, died on December 17th, 2010 in Oregon with the help of a suicide kit he ordered via mail. Although the family never acknowledged what he suffered from and talked about only his secondary depression, an AP article told of his diagnosis of chronic fatigue syndrome that he had suffered with for years and how Nick had become, before his death, markedly worse. He lived with his mother, Judge Ann Aiken. His father predeceased him. A graduate of the University of Michigan, Nick worked on political campaigns and public policy issues until his health prevented this. He leaves his mother, four brothers, two half-brothers and one half-sister. (Source: Associated Press)
Jeanine Isabelle Myers Knaff, 71, died of heart complications from CFIDS/ME on July 26, 2000. Jeanine was a long-term ME and FMS patient who was a registered nurse as well as a relentless searcher for answers which she shared with her Rockford, IL support group. Her daughter, Faith, has suffered from CFIDS/ME since a young teenager. Jeanine had an extensive library of CFIDS/ME information which has been donated to a local hospital. She was considered a heroine by many who knew her in her area. (Source: daughter)
John Knight, 46, died on January 3rd, 2017, after contracting CFIDS/ME when he was 26. John’s father died at the same young age. John was very educated with a J.D., M.P.A. and an M.S. in computer science. By the time he had finished college, however, he was not able to work. He became housebound the last few years of his life. His mother said “John faced the inevitable end with wit and humor.”
Robert W. Knox, 61. died in April of 2010 in Los Ojos, New Mexico. Robert was a longterm patient who struggled for years with CFIDS/ME and had been a member of the National CFIDS Foundation for many years as well as being active in a nonprofit for disabled children.
Shawn Kregan, 46, of Scotland, died in 2019 in Germany from complications of ME. Shawn was a professional photographer who traveled to many countries to try treatments and said he “suffered horrendous neglect since I got sick.” He attended college in Australia and spoke other languages fluently. He was a well known advocate for the Autoimmune Encephalitis Alliance.
Joanne Kruger, died of complications of CFIDS/ME in 1996. (Source: BRAME)
Deborah A. LaMark, of Camillus, NY, died at home in September of 2008, a day after her 52nd birthday after suffering for many years from CFIDS/ME. Debi was a corporate trainer for Blue Cross Blue Shield of Utica before becoming disabled from CFIDS/ME and, at the time of her demise, was enrolled in a nursing program. Debi loved gardening and cooking. Toward the end, Debi experienced many infections and endured a great deal of suffering. She is survived by her parents, Richard and Esther Frederick, a daughter, Sarah, and two brothers, David and Donald, many nieces and nephews. Donations for Debi were asked to be made to the National CFIDS Foundation to help others with CFIDS/ME by funding continuing research funding. (Source: Media and family member)
Rev. John Langham, died in 2002 in Sidmouth Devon, UK after being told, for 20 years by his GP, that his illness was ‘all in his head’. The GP refused to sanction any care for him when his wife was admitted for a long hospital stay. The doctor stated that he could look after himself if he chose to as, according to him, ME did not exist. John was too sick to feed himself nor could he even get himself a drink. He died with his bones sticking out, looking like someone from a concentration camp. His death certificate lists ME as the cause of death. (Source: Devon ME Assoc. PWME)
Jonna Lee Lannert, Ph.D., 52, died with assistance in Michigan in August of 1998 after being accepted for Ampligen on a compassionate care basis just over a year before her death. She found Ampligen only worsened her severe pain and other symptoms. Dr. Lannert got her doctorate in psychology after she became ill and had her thesis published in a medical journal as well as other articles published on both psychology and creative writing. In one, she wrote, "It must be stressed that an individual in crises, including the trauma of catastrophic illness, may mimic the characteristics of a variety of psychiatric disorders." She was compassionate and dedicated to helping others. A resident of Culver City, CA, Jonna was a talented and artistic person who loved dancing and loved life but CFIDS/ME took away all she loved when she became housebound and bedbound. She was a strong advocate and a good friend to many. Jonna left her mother, a sister, two daughters and grandchildren and is missed by so many friends and patients to this day. (Source: Mark M. Iverson, CFIDS Assoc. of America and others)
Maxine Laudan-Davi, 52, died in October in Conifer, CO. She was born in Chicago and spent time helping the support group there. Diagnosed with CFIDS/ME, she felt her multiple chemical sensitivity was her primary problem and moved to the mountains for the cleaner air. "Micki" had successfully battled cancer twice before but this third time, she lost a hard-fought battle. Many friends miss her cherry disposition. She left a daughter, Clare.
Paul Lavenger M.D., died in April of 1995 of colon cancer after suffering with CFIDS/ME for a decade. An internal medicine specialist, Dr. Lavenger had to retire after a 25 year career. His wife got CFIDS/ME just two years before he got ill. In 1991, he publicly criticized the government's negligence in an interview in a New York newspaper as well as suggesting the disease was in epidemic proportions. (Source: Osler's Web:Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson)
Carole L. Lawrence, 65, died in the winter of 2014 after suffering with CFIDS/ME for 14 years. She was diagnosed with cancer and was told the cancer had reoccurred four years later. Carole underwent three chemotherapy treatments but was then diagnosed with pneumonia and septicemia. Years earlier, Carole had joined an online chat group for “CFS” where her wonderful sense of humor attracted Simon. She traveled to England to meet him and he returned with her to live in the U.S. Carole and Simon were married for twelve years before she died and he continues to miss her greatly. (Source: husband)
Tom Lay Jr., died on Sunday, June 23rd, 2002 at home in Middletown, Ohio from hepatitis/liver failure. Tom was a long-term PWME/C who was active on one of the first online support groups, Prodigy. Before becoming disabled with ME, Tom was an accountant. Although single, Tom's family was supportive. He had hospice for the last month of his life. (Source: internet friend from CA)
Alan Lear, 55, died in April of 2009 after a lengthy battle with CFIDS/ME. A former librarian who became disabled with the illness, Alan was also a playwright who had some of his works used for radio shows. He lent his intelligence and wit to local charities in the UK for ME, particularly an ME group in Edinburgh, often brightening the days of fellow sufferers. Alan loved watching films, classical music and Shakespeare. His death was sudden and unexpected. (Source: Media)
Jena Hellman Leblang, 26, died in 2011 by her own hand. Jena, happily married, graduated from Tulane and GW law school and worked for a highly successful law firm in New York City when she came down with CFIDS/ME. Determined, Jena continued to work despite the nausea and pain. When she went to D.C. to see physicians who did not believe her illness existed, she took her own life in their building. Her mother recalled that she had an emergency appendectomy before her illness and “she never really completely healed” which seems to point to the anesthesia worsening her health yet ruling out her other diagnosis of Lyme. An intelligent young woman who cared so much for others, Jena is greatly missed by her husband and her parents. (Source: PWC/ ME, family member)
Tina Marlene Lech, 47, of Springdale, Arkansas, died March 12, 2005. After Tina was diagnosed with CFIDS/ME, she was also diagnosed with Fibromyalgia, scleroderma and Raynaud's Syndrome. Many in her family have also been diagnosed with CFIDS/ME. She fought valiantly while suffering and, shortly before her death, had an operation. She was sent home to recuperate and died just days later. Tina is survived by her husband, a daughter, five sons, her mother, a brother and sister and six grandchildren. Her last message to all of us was, "Miss me but let me go." (Source: Sister of deceased)
Inez Lehrer, died in her sleep during the summer of 2000 from an aneurysm. She was a five year sufferer of CFIDS/ME and had MCS as well. Although she lived in Pebble Beach, her son made her funeral arrangements in Tampa, Florida. Inez's death was reported by her support group, the CFS/FMS/ME Support Group for the Central Coast (California) but she had been too ill to attend the group's meetings.
James S. LeRoy, 47. Died April 5th, 1999 of unknown causes. Contracted CFIDS/MCS in October of 1982. Went on disability in 1993. Was formally a software consultant. Married another CFIDS patient, Sarah, in 1994. James worked tirelessly to help others with CFIDS/MCS and many now say, "He changed my life." James is missed for his love, laughter, strength, intelligence, and skills by his wife, his parents, two sisters, and 23 nieces and nephews. (Source: Sarah LaBelle, widow)
Martin Lev, 32, died by his own hand in March of 1992. Martin was a child actor who was in an NBC movie and starred in a musical before he began work as a set designer. After he was diagnosed with myalgic encephalomyelitis, Martin joined the UK group of Action for ME and became president of the group. (Source: BRAME & Wikipedia)
Kari Levecchia, 51, took her own life in 2018 after being bedbound with severe CFIDS/ME for decades. Kari lived in her sister’s home in Virginia with a severe case of CFIDS/ME. She died in the early part of winter a bit more than a month before her birthday.
Vanessa Li, 32, took her own life on February 4th, 2015, after suffering with CFIDS/ME for 15 years. She thought she had caught the illness while on a family vacation when they traveled from New York to the Italian Alps where she caught the flu. She didn’t understand that influenza was merely a trigger nor did she know of the few symptoms that there were answers for such as her frequent migraines. Vanessa had joined others in an online crowdfunding that raised money for Columbia University Medical’s Dr. Ian Lipkin which she had called the Microbiome Project. She is survived by a brother and her parents.
Joan Lidoff, Ph.D, a professor of English at the University of Texas at Austin, died on October 20, 1989, at age 45, of cardiac arrest. Dr. Lidoff had a Ph.D. from Harvard University and taught at the University of Massachusetts and Boston College before joining the faculty of joining the faculty at UT. She was a pioneer in women's studies as well as an author. Joan struggled for years with what was then called "Chronic Epstein-Barr Virus." Her heart complications seemed a direct result of her long-term illness. (Source: friend)
Vale Dianne Little, 58, who was Australian, died after years of suffering with CFIDS/ME. Dianne was a talented IT person when the internet was young until she found herself unable to work. She had a long battle with her insurance company who refused, for years, to admit her disability. She exposed them in the media as well as on a website until she finally won that battle but the battle of CFIDS/ME gave her lung cancer, even though she was a nonsmoker, and that ended her life far too early.
Priscilla Loanes, Female. Died 1992 by her own hand. Was Boston's first support group leader and she is still missed by many of her friends.
Nancy Lou Loe, 56 year-old female. Died June 25th, 1994. Cause of death: unknown. North Sound CFIDS Support Network Leader, she wrote shortly before her death, "The guilt, shame, and suggestion of others that there was nothing wrong were destroying me more than the illness." (Source: Newspaper obit and letter by Nancy.)
Eileen “Bunny” Logan, 62, died of sepsis, heart failure and multiple infections due to CFIDS/ ME in early 2013 after entering the hospital two weeks earlier. At that time, the hospital physicians thought she would only last a day or two. She began deteriorating rapidly after she was put on prednisone months earlier. Eileen’s nickname came about when she was born on Easter, the same as had happened with her mother. A woman with a promising future, Eileen got sick on her honeymoon in Hawaii 25 years before she died. Her husband, Jeff, was diagnosed with CFIDS/ME just eight months later. They both saw Jay A. Goldstein, M.D. and remain huge admirers of him while missing his expertise after he no longer was in practice. (Source: husband)
Amy Long, a long-term patient with CFIDS. Died late 1980-s by her own hand. Was one of the original eleven to be put on Ampligen on a pilot trial by HEM Pharmaceuticals. Amy was an acutely severe patient.
Peggy Lowell, died on March 27th, 2007 at the age of 54. Peggy kept track of the data base for the River Falls (Wisconsin) CFIDS Support Group, printed out their mailing labels and contributed some funny cartoons about her own experiences of living with CFIDS/ME. A progressively severe patient who experienced a great deal of pain, Peggy courageously began her own home business, the Lowell NcNaughton Soap Company. Living alone, Peggy worsened and realized she could no longer care for herself. A nursing home seemed inevitable. She decided to take the only other option and end her life. Peggy will be missed by many friends as well as her sister, Pat Hammerback. (Source: Sally Borden)
Patricia Holmgren Lynch died just weeks after her 59th birthday in June, 2010 of myalgic encephalomyelitis related lung cancer while also suffering a total body potassium problem already shown to be part of ME along with severe weight loss. A resident of Southampton, NY, for years, she was a talented flower arranger for her husband's nursery before she was too ill to work. When she worsened, she used what energy she had to fundraise and advocate for many ME causes such as RESCIND, CFIDers, the National CFIDS Foundation and others such as Beanies for Baghdad. Pat supplied many soldiers with notecards from the NCF and was conducting another online fundraiser selling AVON products to help research funding for the NCF just before her demise. She was creative and loved to make others happy even though ME had taken away so much from her own life. Pat had many friends who appreciated all her stories and her outstanding compassion despite so many who never understood her suffering or her disease including, like many, some family members and physicians. She is survived by her mother, Peggy, and her husband, Jerry, other relatives who loved her and many, many friends who continue to miss her. (Source: friend)
Dr. Anne MacIntyre, passed away while sleeping on November 28th, 2018 at her home in England. She had ME but later she had other serious health problems that included Rheumatoid Arthritis and then faced a serious lung illness. Before she became ill, she was a physician on a ship and spent time practicing abroad where she specialized on diseases of the eye. She had been active with several ME groups in her country and is missed by so many including all the patients she gave helpful advice and compassion to.
Audrey May Cornish MacKenzie, 65, died on June 4th, 2007, in Toronto, Canada. Audrey was a nurse who got CFIDS/ME over 25 years before her death. From 2000 to 2006, Audrey was the president of the Myalgic Encephalomyelitis Association of Ontario. She put out a newsletter, did fundraising and addressed politicians. A friend described her as "kind and caring…frail but formidable and fiercely determined." (Source: ME Assoc. of Ontario)
Joan Mansell, died in September of 2002 of a heart attack. Joan was a member of the New South Wales, Australian group of the Northern Rivers CFIDS/ME/FM Support Organization and was a long-term patient with CFIDS/ME. She was 86 when she passed away. (Source: Merle Fullerton, NR CFIDS/ME/FM)
Nina Maraney, 46, died of breast cancer that metastasized to her brain in 2012. Nina had to give up her job as a music teacher when her ME became worse but, just as she thought she was improving, cancer led to three operations, chemotherapy and radiation. Nina was a warm and delightful woman who left a 13 year old daughter along her husband. She is deeply missed by them and many more in her UK community. (Source: Julia Cameron)
Glenn Marcus, male in early 20s, 1994. Cause: Unknown. Autopsy showed stomach seemingly exploded with bits found throughout body. Died in his sleep while attending college part-time in California. A Massachusetts resident, he had CFIDS/ME since a young teen. Remembered as a warm, cheerful youth with many unfulfilled dreams. Survived by one older brother and parents. A memorial fund that distributed library books in his name was established. (Source: parents, support group leader.)
Toni Rae Marshall, 68, died November 8th in 2016. She was born in Nebraska and was the oldest of six siblings but grew up in Maryland where she sang in her school’s glee club as well as her church choir before going to college. After a short marriage and having a daughter, Toni became an active volunteer and volleyball player in addition to working but that ended when she was diagnosed with CFIDS/ME. She then became helpful in groups for CFIDS as well as FM groups. She became a co-leader for a few groups and was actively taking phone calls and emailing until she worsened and, soon after, died in a hospital. (Source: Phyllis, obituary)
Patrick William Bussell Masefield, 69, died in July of 2012 of the end form of ME, cancer, after acquiring the illness at age 44. He had to use a wheelchair and relearn how to talk after the illness began. “Paddy” was an influential theatre director and prolific playwright who directed over 70 stage productions and founded theatre companies. He was born in Uganda and came to Britain when just a child. After his diagnosis, he became a noted disability activist, especially bringing about physical accessibility to the arts. Paddy became the first honorary life member of the Director’s Guild of Great Britain as well as becoming active in the U.K.’s ME Association. Missed by his wife, daughter and grandchildren, many disabled patients will find life a bit easier because of Paddy’s advocacy. (Source: Matt Smith, The Guardian)
Leslie A. Masewicz, of Del Mar, CA, died in October of 1999 due to the harassment and badgering of UNUM, her long-term disability company, combined with the ravages of her illness. Leslie was scheduled to make a TV appearance in the spring of 1999 but became too frightened. In 1997, she had written the Department of Labor about her abuse and asked, "How is this horrific activity allowed to happen and to continue?" Leslie was diagnosed with CFIDS/ME.
Lisa Ann Matson, 53, died suddenly on October 1st, 2016 in Salinas, California after many years of suffering with CFIDS. She studied Child Development and Psychology in College and was always willing to help others as well as even a stray animal despite her own health problems and she inspired many to champion a cleaner environment. Lisa is survived by her son, Shea, a brother and many other family members and friends. Contributions in her memory were asked to go to the NCF.
Jim Maude, male, age, date of death unknown. Cause of death: Liver and spleen damage due to CFIDS/ME. New York City resident, had been employed in a workplace where seven people now suffer from CFIDS/ME. (Source: colleague letter.)
Craig W. Manpin, 49, passed away on August 7th, 2019 at his home in Virginia. He contracted CFIDS/ME, what his obituary called “a debilitating illness” when he was 17 yet he got his bachelor’s degree and his master’s degree, both with honors, despite his suffering. He had a wonderful sense of humor and stayed in touch with his family and friends as well as many other patients. Many continue to miss him. (Source: Susan T.)
George S. Ascott May, Male, 39 years-old. Died Sept. 6th, 1995. Cause of death: unknown. Occupation: airline rated pilot and printing specialist. (Source: letter from friend and obit.)
Lois McAtee, 52 year-old female. Died 1992. Cause of death: lymphoma attributed to CFIDS/ME. Long-term care nurse. Her two daughters, one grandchild, and one niece also have CFIDS/ME.
Judy Elaine McCraney, 56, died on September 5th, 2008 of stage 4 lung cancer only with a sack of cancer connected to the main heart artery or known as the pulmonary valve. Residing in South Carolina, Judy fought a long and very heroic battle with CFIDS/ME. Judy will be remembered as a lover of all people, nature and animals. She left her husband of 38 years, Ken S. McCraney as well as a son, Greg and two brothers. She also left her cat, Angel, who was devoted to her. She is missed by many friends along with her family. (Souce: J. Redmon and son, Greg)
Kay McDonald, 54, died of smoke inhalation when her apartment building burned. Kay had been ill with CFIDS/ME since age 20. She is sadly missed by many members of her Athens, GA support group. Kay left husband, Bill.
Patti McDowell, died in Apache Junction, Arizona, in 2011 when in her mid-70’s. Before moving to Arizona, Patti was instrumental in arranging meetings for her California support group and suggested a fund raiser of a grape mural for their local annual Grape Festival. That suggestion resulted in both a blue ribbon and a monetary award for the California support group. The support group still uses this fundraiser. Her daughter predeceased her after suffering with breast cancer during a pregnancy. (Source: San Joaquin CFIDS/FM Support Group/CA)
Rose-Marie McGinn, died in her native country of England in early 2020 after suffering for years with CFIDS/ME. She worked in the clerical medical field. (Further information about her is welcomed.)
Constance Eleanor Turner McIntyre, 71, died on May 5th, 2017, after a long battle with CFIDS/ME. Connie grew up in McConnellsville, NY and graduated with honors from Camden High School. She moved to Rochester, NY in 1963 to pursue her education at Roberts Wesleyan College where she, again, graduated with honors and began teaching. She met and married Marvin McIntyre and they had three children and adopted another two while they fostered dozens more. She retired from teaching in 1994 as her CFIDS/ME became worse but reached out to many others struggling with the illness. Connie will be missed by her husband, children, grandchildren and great-grandchildren along with many other relatives, fellow patients and friends. (Source: PWC friend, obituary)
Maureen McNally, 75, died in December of 2012 after suffering with CFIDS/ME for 45 years. She died while cared for by Hospice. Known for her wonderful sense of humor, Maureen wrote articles for her Illinois group’s newsletter where she was active and became a board member of an Illinois patient group. She left 3 sons along with 8 grandchildren and numerous friends who continue to miss her. (Source: CFSCC)
Nicola McNougher, 43, traveled to Switzerland in 2008 to take her own life after suffering from intense ME pain for many years. Helen, who was a teacher and psychologist in England, had severe systitis and kidney problems before being diagnosed with ME in the 1990's. She said, "My life has become an inhumane existence." She left a husband and two teenaged children whom she referred to when she said, "I believe they have lost their mother to ME." Her last act provided tissue samples for medical research.
Rene Mebus, 26, died June 30th, 2020 from severe ME. He graduated college with high grades in mechanical engineering. In his spare time in Germany, he was involved in the voluntary fire brigade as well as designing and creating their website. While working on his master’s degree in 2017, he came down with ME and, after a few months, suffered from severe orthostatic intolerance and became totally bedridden. He had to lie in absolute silence and darkness. He worsened more and became paralyzed and had seizures. He deteriorated further via a stay in the hospital and had immense pain. He is unendingly missed by his pwME brother, his parents, relatives, and many friends. (source: Jannik Mebus)
Kathleen "Kitty" Meeks, 54, died on March 24th, 2001. She valiantly fought a battle against both breast cancer and CFIDS/ME for many years. Kitty lived in southern California and was active in her cancer support group. Her sister, Vivien Haynes, an CFIDS/ME activist, felt it hypocritical to complain about her own pain when her sister had battled cancer as well as CFIDS/ME with FMS. She is greatly missed.
Kara Ann Menowske, 36, died June 3rd, 2001 of complications from Myalgic encephalomyelitis. Kara graduated Kathryn Gibbs and worked for an investment firm until what appeared to be an ongoing "flu" forced her to stop working nearly 10 years ago. An autopsy was inconclusive. The whimpering of Kara's dog alerted her mother who found Kara dead. Kara left her parents, a sister, and brother, all of Massachusetts. Donations in her memory have gone to research through the National CFIDS Foundation.
Nita Mensik, died of cancer induced by ME in 1997. Nita, a committed activist, was from Lismore, Australia. (Source: www.nor.com.au)
Harry Metsemakers, a patient who was online with a group for the United Kingdom's ME patients, died on July 2nd of a sudden heart attack. "Harry was warm and caring and reached out to many others," a friend of his told us. He left a wife and grown children. His widow passed on his medical books to his friend, John. Harry is acutely missed.
Daryl Milam, died in the fall of 1999. A member of the Anderson Area CFIDS/FM Support Group, she had breast cancer and another form of cancer, both thought to be a result of her CFIDS/ME. A mother and grandmother, Ann was 53 and lived in South Carolina. (Source: support group leader.)
Brooks Mileson, 60, died in late 2008 after collapsing at his home in Blackford, near Carlisle and taken to a nearby infirmary. He had suffered from CFIDS/ME that newspapers reported to also be a "brain infection". The Sunderland-born businessman financed a football team, Gretna, that made it from the Third Division to the Scottish Cup final. One friend described him as "gernerous and passionate and very honest and trustworthy." (Source: Media Reports)
Laura Reina Milgrim, 68, a long-term patient with ME, died in mid-March, 2001, of pneumonia which lead to blood poisoning, a complication of ME. Laura was a caring, vibrant person who spent years trying to have physicians and researchers take an interest in ME. Laura had an adult son, John, but died weeks before her first grandchild was born. In her obituary from The New York Times, Laura was called "Manhattan's lady of dignity and grace." She danced the Opera Ball in Vienna, toured with Bob Hope in the USO, explored the globe and loved the Yankees. In constant pain, Laura had an unconquerable soul that fought to the end. A member of The National CFIDS Foundation since its inception, she is greatly missed by many friends.
Sophia Mirza, was an active and outgoing young woman who loved to travel and to hike. She died on November 25, 2005, at age 32. Her death came nearly four years after the UK published a report on "CFS/ME" that recognised these patients were confronting medical arrogance and ignorance and just six years after contracting a "'flu" that she could not recover from. Her mother helped to care for her bedridden daughter and told told many how medical professionals abused her by placing her, unattended, in a psychiatric ward after breaking down her door. Her initial autopsy showed no cause of death. An advocacy group arranged for a more extensive autopsy that found "unequivocal inflammatory changes" and many other abnormalities including a "fatty liver" now known to be caused by the ciguatera epitope. Sophia was the first person with myalgic encephalomyelitis to die and have the autopsy to prove she died from M.E. in England. There is a site dedicated to Sophia under www.sophiaandme.org.uk
Tara Morgan, 20, died in September of 2011. When her brothers called to her and got no response, they found her not breathing in her room in Letchworth (UK). Ambulance medics were unable to revive her. The inquest noted that she "had a history of being unwell for some time" and that her immune system "had been unwell for some time". They felt her death was due to a "dysfunctional immune system" and said it could have something to do with "her chronic fatigue syndrome" which was identified as "persistent fatigue." Tara had been attending North Herfordshire College majoring in child care. She left her parents and two brothers. (Source: media, Comet 24)
Beverly Morin, Female, age unknown. Died 1994. Cause of death: Complications attributed to CFIDS/ME. (Source: support group leader.)
Dorothy Isabel W. Morris, Ph.D., 70, died on August 23rd, 2012 in Melbourne, Australia. “Deemee” had CFIDS/ME before she was studying for her doctorate of philosophy from Deakin University. Her thesis was entitled “Double Disability: Lived Experience of Australian Tertiary Students with ME/CFS” when she was a member of the faculty of the University in 2003. She commented online often as she continued to advocate as a patient herself. She died in a hospital leaving her husband, Ern, and daughters Yvonne and Brenda who all helped and supported her throughout her illness. (Source: Tom Kindlon, Irish ME/CFS Association)
Judy E. Morris, M.D. 50, died on February 23rd, 2008. A resident of Monson, MA, Judy was a young emergency room physician when she got CFIDS/ME. Judy spent years ferociously fighting her longterm disability company, UNUM. When UNUM sought to dismiss her charges when she claimed they treated "CFS" differently, a judge ruled that her ADA (disability claim) was valid. She publicly accused UNUM of racketeering, extortion, wire fraud, collusion and attempted murder. She eventually settled for a large lump sum. When CFIDS affected her vision, she was rediagnosed with multiple sclerosis. So many will miss Judy and her brave refusal to be silenced when battling a disability giant.
Malcolm Morrison, 73, died in the early fall of 20l3 of cancer as a result of CF IDS/ME. He majored in college in theater which led him to teaching and directing theatre programs. He moved to the US when an art school in North Carolina hired him and became their dean. Other colleges of performing arts hired him and he won awards for his inspirational teaching. Malcolm was a member of the NCF. Upon retiring, he lived in Australia. His wife, Johanna, survived him along with his daughter, Niki and a granddaughter, Jennifer. (Souce: The Guardian)
Jean A. Morwick, 56, died on December 29th, 2000, after a five week hospitalization for complications of CFIDS/ME. Jean had been battling connective tissue damage to the spine, lymphodema, and other long-term effects of CFIDS/ME. She had been housebound for the last ten years of her life following an onset when she was 30 years old. Jean was a member of the National CFIDS Foundation since its inception and helped with advocacy as much as her health permitted. She was a source of comfort to many with the illness, never hesitating to give time to others. Although she was unable to work, she kept up many interests, had pen pals from all over the world, and kept as active as was possible. Jean, from Scituate, Massachusetts, was survived by her parents, although her father died just months later. She also is survived by one brother. Many of our members miss Jean.
Alison Kramer Murphy, female, 45 years-old. Died 1998. Was a special education teacher but was sick for many years. Died of "unknown causes" while under a hospital's care. Left one son. (Source: obit and person friend.)
Janis Murphy, 40, was from Henderson, NV. She had a severe and long battle with CFIDS/ME and fibromyalgia when she sought help to end her life in June of 1997. The Associated Press reported that her body was found in a motel in Michigan and that Dr. Jack Kevorkian was assumed to have assisted her in ending her life of suffering. Her father, James Linda, was quoted saying his daughter lived with "intractable and unrelenting pain" and, though he certainly was not happy to see his only child die, "There are things in this world worse than death. (Source: Associated Press)
Barbara A. (Comeau) Murray, 81, died on February 15th of 2014 after a lengthy battle with CFIDS. Her first husband, George Comeau, pre-deceased her along with her sister, Helen Godfrey. Born and raised in Haverhill, MA, Barbara lived in South Dennis, MA for many years and then lived in Boca Raton, Florida for nearly two decades. A talented woman, Barbara loved crafts and was, for years, a member of her parish choir. Determined to find answers for CFIDS/ME when her daughter, Diane M. Comeau, died when she was in her 40's, Barbara created a research fund via the National CFIDS Foundation in her daughter's name with all donations going to fund research that have futhered the science that found the cause of CFIDS/ME. Barbara will be missed by her husband, George Murray, four sons and their spouses from New Hampshire, Vermount and Massachusetts, grandchidren and great-grandchildren along with neices and nephews. Her death was both painful and prolonged yet the memories of her spirited warmth live on for many.
Carolyn Musca, a long term ME patient died in 1990 from a sudden melanoma. Carolyn was the author of "The Artist, The Egg, and the Illness." She was an artist that used Egg Tempera and lived in Western Australia. (Source: Australia's Country Network.)
Nell Myers, 67, a long-term sufferer of CFIDS/ME, died of lung cancer on May 30, 1998. Nell, from Mead, Oklahoma, rarely could leave her house during the last five years of her life. She left an adult son, Robert Harrington, who also has CFIDS/ME.
Theda Kathleen Myint, 36, took her own life in July of 2013 after suffering with ME since she was a vibrant and intelligent college student in her native Australia. Theda's symptoms became so severe after a few years that she became bedridden yet most physicians felt she had a mental disease. She joined her mother and boyfriend advocating for funding as she believed there was an effective treatment and or cure somewhere but her hopes were dashed each time. Theda leaves her mother and father along with an older sister and many patients worldwide who followed her tragic story. (Source: obituary, media)
Rachel Ann Coulthard Naclerio, 30, took her own life in May of 2009 after many years of suffering from ME. Although Rachel married a year before, she found she often spent days bedridden. Her husband said they wanted a child but, first, Rachel "had to be well enough". She had been unable to see any specialists before her death to see if any help was available yet her mother said "No one really understands why she took her life." (Source: Sheffield Telegram, UK)
Nancy A. Nagler, 68, died on December 16th in Massachusetts. She was a member of the NCF since it began and, before that, was in a local support group as well as a state one. She will be missed by her husband, Wayne Purnell, as well as by many, many friends and relatives. Like most patients with CFIDS/ME, Nancy died of cancer. (Source: The Boston Globe)
Justin Arthur Noble, 31, died in October of 2016 after a long battle with CFIDS/ME. He loved to play hockey since the age of 5 and, later in life, took up fishing when he would get up at 3 a.m. to head to the nearby river in British Columbia, Canada. He was active in some ME groups online on the computer. He is missed by his parents, his son, siblings, nieces and nephews, cousins and friends.
Faustine Nogherotto, 31, was a famous singer in her native France until CFIDS/ME took her life. Faustine was featured on television as well as a singer for audiences with her beautiful soprano voice. She was dismissed by the medical practitioners just as so many are in France to this day but continued on with her career with determination despite the extreme pain and other severe ME symptoms. She helped to raise money for ME awareness. She said, “For five years, I have been living in hell” and she missed so much of what she dreamed of doing in the future. ME took her life in January of 2021. She is missed by so many fans along with her personal friends. (Source: Jacquie Wilson)
Sharon O'Day, 54, died in May of 2010 after a decades-long struggle with CFIDS/ME in her native Australia. Sharon had been active in a chat group for this ilness where she was able to post her comments online and met one other patient, Stef, who went out of her way to advocate for Sharon and help in every way possible. Before CFIDS/ME struck, Sharon was a very adventurous person who hiked, was a rock climber and enjoyed travelling. Her father and sister predeceased her but she had a loving partner, Brendan, who did all that was possible to make her more comfortable. Until the end, Sharon displayed a wonderful sense of humor and she continues to be missed by many. (Source: close friend of Sharon)
Mary Olson, 71, died on December 4th, 2003 while hospitalized in Billings, Montana. Although fluid and cancer was found in Mary's stomach, total kidney shutdown was considered the complication of CFIDS/ME in her death. Her pastor's wife remained a help to the end after Mary had battled with CFIDS/ME for 20 years although physicians in the area did not "believe" the disease existed. Mary was a member of The National CFIDS Foundation and a "free, independent spirit who always gave of herself," according to a friend. Her husband left her years before after she contracted CFIDS/ME, and she lived alone with her dog, Rambo. Mary left many good friends who miss her. (Source: patient friend)
Terri Opsitnick, 46, died suddenly of CFIDS/ME complications in October of 2001. The coroner's report said her adult-onset asthma restricted her breathing during sleep which restricted oxygen to the brain during REM sleep. One of Terri's three young children found her in their San Bernadine County home. Brandon, Mac, and Theresa have been taken to Pennsylvania to live following their mother's death. Terri's pain was most pronounced and she was active online with FMS groups.
Kristina Downing Orr, 53, died April 2nd, 2014. She was from the United Kingdom and authored a book on ME. When she developed cancer, she was given chemotherapy which she could not tolerate. She left her partner, Andrew and a sister along with three brothers. Her funeral service was at the Oxford Crematorium. (Source: Marie Reed, Oxford Mail)
Anne Ortegren, a CFIDS/ME patient from Stockholm, Sweden, took her own life after suffering for 16 years. She had posted her blogs on the internet for many years and wrote a farewell post before ending her suffering which said, “When you read this I am at rest, free from suffering at last.” She was “homebound and mostly bedbound” as her symptoms worsened dramatically to the point where she could no longer allow her friends and relatives to visit. (Source: Kathy Collett and Anne’s internet blog)
Pauline Overden, 69, passed away in February of 2019. She was the President of the Herefordshire ME/CFS/FMS Group in Worcestershire (UK) and was awarded the Herefordshire Volunteer of the Year award. Pauline was a nurse at the Royal Free Hospital in London when 70 members of the staff got sick in 1955 along with over 200 others. She is missed by her husband and two daughters along with many others One of her doctors told her that ME “is a living hell.”
Lois Owen, 34, died in 2011 in England and an inquest was held in early 2012. Lois got sick as a child and was finally diagnosed when she was 14. She graduated from the University of Derby where she combined psychology, healing arts and drama. A talented writer, Lois was reported to have died “from chronic fatigue syndrome and anorexia”. The latter condition was given by a consulting pathologist since Lois was bedbound, too weak to speak and had to have her food liquefied in order to eat. He was, of course, wrong just as others were wrong when they had, earlier, put her in a mental ward. Her father said, “She had a heart for the underprivileged. It’s ironic she tried to help people but that no one, in the end, could help her.” (Source: Derby Telegraph , patients)
Patricia Page died on September 12th, 2001, at age 65. Patricia was a long-term patient who was active on internet groups and tried to assist others with the disease. She endeared herself to many on the internet. Pat's CFIDS/ME was secondary to her rheumatoid arthritis which began in her 30's. She leaves behind her husband of 30 years, George, and her daughter, Penny. Patricia was an animal lover, especially dogs, and, most especially, German Shephards.
Rosie Page, 67, died in the late spring of 2010. Rosie was a dancer, a development worker, an ME campaigner, and a singer who embraced life. She loved to garden and grew organic vegetables while running an ME group in Camden, England and arguing with all those who suggested CBT was the answer. Rosie endured three episodes of breast cancer which, by 2008, had spread to her bones and liver. It didn't stop her from making a short film and continuing on as long as she could. Her husband, Ben, survived Rosie along with her son, Gavin and grandchildren. (Source: The Guardian, UK)
Princess Leila Pahlavi, 31, died on June 10th, 2001 of what the newspapers called "the rare disease myalgic encephalomyelitis." The youngest daughter of the late deposed shah of Iran, she was a child when the Ayatollah Khomeini took over country. Leila graduated from Brown University and spent years living in Connecticut. She was a resident of London when she died. Her mother resides in Paris where Leila was buried. Aside from one brother, nobody mentioned "M.E.," but preferred to blame her suffering on "depression," although she had been sick for six years. The physician who prescribed for her in London was being investigated for over prescribing. Cocaine and Seconal was found in her blood.
Shirley A. Paine, died on February 26th, 2015, after suffering for many years with CFIDS/ME. Born in Massachusetts, she and her late husband, Harry R. Paine, moved to New Hampshire when they were retired where she became a member of a support group for her illness. She worked as a switchboard operator until she became too ill and moved back to Massachusetts when her suffering became worse. She died in a Beverly hospital. Shirley had six children and is also survived by 13 grandchildren, one great-grandchild, two brothers and a sister along with many nieces and nephews and, of course, many other PWC/MEs who will miss her. (Source: Support Group Leader, obit)
Andrew Palese died in 2007 at the age of 59 after suffering for over a decade from CFIDS/ME. He was a technical writer before the disease disabled him. A resident of Elmhurst, New York, Andrew was both intelligent and compassionate. Although no autopsy was performed, it was assumed that he died of heart complications. Determined to try to help others with CFIDS/ME, he willed a generous amount to research via the National CFIDS Foundation. Andrew left his mother, Pauline, and a sister, Laura along with many friends who will continue to miss him.
Sarica Narula Patel 50, died on September 6th, 2018 after having CFIDS/ME for many years. Sarica lived in Glen Mills, PA. She loved music and loved to dance. Her death is mourned by her husband, Dipan, her son, Kari, her mother and many other relatives and friends.
Giovanni "John" Paternostro 52, died at his home in Connecticut in October of 2019. He was born in Montreal, Canada but his family moved to the U.S. when he was just a preschooler. After graduating high school, he attended and graduated an institute for funeral services. He worked at a funeral home for many years before he became sick and loved vactioning in Florida as well as playing cards. He is survived by his mother, a sister, two children, and many other relatives and friends who cherish his memory. (Source: Kathy C.)
Elizabeth Derryan Paul, PhD lived in England and had CFIDS/ME for decades. She volunteered as secretary for a support group until it closed in 2013. Her lectures and appearances helped advocate for the disease. She helped so many patients in ways such as having them meet at her home for classes on therapeutic yoga. She was an inspiration to many patients and is missed by them. She worsened after retirement and had to move into a nursing home where she eventually died in February of 2021.
Laurie Jean Pennella of Groton, CT died on January 26th, 2006 at the age of 44 from CFIDS/ME. Her symptoms included extreme fatigue, memory loss, inability to digest food, and an intense and excruciating burning pain in her stomach, abdomen, urinary tract and eyes. She was a beautiful, caring and highly educated person. Throughout her short but productive life, Laurie helped so many people. For the last several years of her life, Laurie explored every possibility to find an effective treatment for CFIDS, but always met with a stone wall. She wanted to be on this list to encourage everyone to keep trying to find a medical breakthrough to eradicate this very painful and misunderstood disease. Laurie left her parents and a younger sister who reside in the state of Washington. (Source: friend)
Vic Perrine, age unknown, died of complications of ME/CFIDS, on October 28, 1999. He died of a malignant lymphoma caused by reactivated Epstein-Barr Virus, an occurrence with ME. The Minnesota resident had not been diagnosed with cancer until the last year of his life although he had been very sick for 4-5 years. Vic is survived by a daughter who also has ME/CFIDS along with high levels of reactivated EBV. (Source: Anita Burgess, support group leader)
Wendy Peters: female, 34 years-old. Had CFIDS for 16 years. Cause of death: Epstein-Barr Virus (according to obit). Wendy died while a patient at Massachusetts General Hospital. Rockport, MA. (Source: parent.)
Gary Pethybridge 67, died unexpectedly Janurary 17th, 2017. He was known as Cherub and suffered for decades from CFIDS/ME in British Columbia, Canada. Married to Shannon for 43 years, they had six children and six grandchildren. Cherub was a percussionist, craftsman and loved gardening. He is missed by many. (Source: Phyllis)
Patty Phillips died on January 3rd, 2005 at age 60. Patty was diagnosed with CFIDS/ME yet always cheered others with her upbeat attitude. She looked uncannily like "Maxine" of greeting card popularity and reminded many of Maxine's outspoken character. Active in the SJ CFIDS/ME/FMS support group of California, Patty's absence from their pot luck dinners and other activities will be felt keenly. She was married for 43 years to her husband, Arnold and also left her daughters Terry Unger and Tricia Johnston, 5 grandchildren, and her sister, Vivien. She will be remembered and missed by the many lives she touched and the smiles she brought to so many. (Source: Family member)
Ruth M. (Rogmer) Pipitone 78. of Atkinson, N.H. died on June 4, 2012 after a decades-long battle with CFIDS/ME. Her husband, Pascuale, predeceased her. Ruth was a talented artist who, as a teenager, got an award of free lessons from Boston’s Museum of Fine Arts. She was a warm-hearted person with a great sense of humor who began working when she was very young where she found her ideas and intelligence moved her up to a high position. She moved from Massachusetts to New Hampshire and began writing for a local newspaper. Ruth had 3 sons, one that predeceased her. She also left six grandchildren. Ruth saw physicians in Boston trying for help with her illness decades before her death. She is greatly missed by many. (Source: PWC/MEs)
Dave Plank, from South Africa, died of complications of ME. Dave died in 2001. (Source: BRAME's "Forget Me Not" list published in Australia's Country Network newsletter)
George Pollack, 80's, from Charters Towers, Queensland, Australia, died in 2001. George was a quiet man with dignity who often felt the profound isolation of myalgic encephalomyelitis while living in his remote country town. He leaves a sister who is suffering from cancer and a small dog who was his companion for years. (Source: Country Network of Northern Rivers CFIDS/ME/FM Support Association, Inc. of NSW)
Michele Porcoro: female, age and date of death unknown. Had CFIDS/ME for over 5 years. Cause of death: liver failure caused by overdose of acetaminophen. (Source: letter from friend.)
Elizabeth C. “Libby” Potter: 67, passed away in November of 2019. Libby lived in and graduated college from Massachusetts and taught school in Danvers. She was active in a chapter of the Daughters of the American Revolution and on the board of a state organization for CFIDS/ME. She helped arrange for a major presentation on ME/CFIDS for the state nurses at a health conference. Libby is survived by one sister and three brothers as well as many other relatives and friends who miss her including those who, like she did, suffer from CFIDS/ME.
Lisa Brinkley Powell: 55, of Morganton, North Carolina, died in March of 2020. Lisa had been a dental hygienist and helped to begin the Smart Smiles Program in the Burke County Schools. Lisa was happily married and had two sons. She is survived and mourned by her husband, Lance, as well as her mother, sons, a brother, and many other relatives and friends.
Connie Pruit died late in 1999 leaving her husband and family. A member of the Anderson CFIDS/FM Support Group, she was a long-term CFIDS/ME patient and is missed by her family and friends. (Source: support group leader.)
Gilda Radner: female, died early 90s. Diagnosed with CFIDS by Dr. Anthony Komaroff, died of ovarian cancer. Actress and comedienne.
Louise Ramage, 58, died on June 23rd, 2016, after her physician forced her to go off the opiates she had been prescribed for the pain of CFIDS/ME. She had been sick with the disease for decades. She explained, “Have myalgic encephalomyelitis and my hope if for awareness for all – Drs as well as the public…a misunderstood, understudied, debilitating illness!” Louise lived in White Rock in British Columbia, Canada and is missed by many. (Source: Facebook, PWC/ME Phyllis)
Guy Ramsey, 18, died by his own hand in July of 2009. A victim of CFIDS/ME, Guy got sick at age 12 and often had to miss school. He tried multiple remedies including light therapy and acupuncture but saw little or no help. A partial remission allowed Guy to go to college as a design and art student but he then found his vision affected along with his pain and many other symptoms worsening. A note to his mother, Alison, explained that he was sorry but he felt he had to end his suffering. (Source: UK M.E. Charity)
Lt. Col. Ret. Jack Redmon, 82, a resident of South Carolina, died December 2, 2010 of cancer. Jack was a retired pilot for the US Air Force and taught ROTC for many years. He was diagnosed with CFIDS/ME late in life. He left his devoted wife, Jeanne, who has been a severe patient and strong advocate for many years, two sons and a daughter as well as grandchildren and great-grandchildren. Jack was a former football player and in excellent physical shape until CFIDS/ME took control of his body. He remains greatly missed by many friends and his devoted family members. (source: friend, family)
Margaret Jeanette Redmon, 85, died on May 31st, 2013, in Georgia following a heart attack and a stroke after suffering for many years with CFIDS. Jeanne's husband, Jack, passed away two years earlier and Jeanne was sure he had CFIDS/ME although he was not officially diagnosed. Her first husband, George Sargent and her sister predeceased her as well. Jeanne loved helping others. Before she was diagnosed with CFIDS, Jeanne volunteered in hospitals. She formed a support group following her diagnosis and wrote a newsletter and she often asked to "borrow" articles from The National Forum. She suffered from pain along with so many other symptoms but would not allow that to stop her from reaching out to others. The warm, intelligent and loving Jeanne left a daughter and two sons along with many grandchildren. Patients with whom she remained close with continue to miss this wonderful and caring woman who continued to reach out to others despite her own severe suffering. (Source: PWC/ME friend, obituary)
Joanne Redumis, Female, age 33. Died Feb. 22nd, 1999. Dedicated activist who gave support and encouragement to others in Texas. Cause of death: unknown but attributed to CFIDS/ME.
Doris Reed, female, age unknown. Died Aug. 1996 in Norwood, PA. Was a long-term patient. Cause of death: suicide. (Source: friend, support group leader.)
Sherry Reese, died days before her 59th birthday in 2006. An LVN for 32 years, Sherry had been diagnosed with diabetic neuropthy, CFIDS and FMS when she was forced to take early retirement. She was an advocate for the Medic Alert program and a valued volunteer for the San Joaquin CFIDS/FMS Support Group in California. Her cause of death was said to be complications of her diabetes. She left her parents and a sister along with four children and eight granchildren. Missed by so many in her support group, she is remembered as "always giving, always kind, more than generous" and, true to that, donated her body to medical research at UC Davis School of Medicine. (Source: Vivien Haynes, SJCFIDS/FMS Support Group)
Stuart Reid, died suddenly in early 2000. Stuart was president of the ME Victoria Association (Canada) and a dedicated volunteer worker. He leaves his wife, Pauline and family. (Source: Hellie McLelland)
Dennis Reublin, male, age unknown. Died 1998 by his own hand. Caring and astute, he tried to buck the system and was frustrated time and again by the uneducated and unbelieving. A resident of New Mexico. (Source: a friend.)
Julie Revill, 58, took her own life in 2006 near her family home in England after years of suffering from ME. Julie had found some help at the only hospital in Essex that treats CFIDS/ME but was denied funding by her local health authority for any further treatment and her health deteriorated dramatically. (Source: newspaper)
Maria Isabel Reynolds, 57, died on October 27th, 2010. Isabel was born in Portugal and had lived in Houston, TX for many years. Just the day before her death, she had seen her "CFS specialist" in Houston. She had a massive seizure early the next morning and her husband, Paul, called for an ambulance. She died in the hospital of a massive brain bleedout that was accompanied by excessive high blood pressure and fever. Her sister had died just two years earlier of multiple sclerosis yet her cause of death was the same. Isabel had been a promoter for entertainers and a real estate agent before she got too sick to work. She was a kind, loving person with a wonderful laugh. She leaves her children Claudia, Lenny and Salvador, grandchildren and great-grandchildren. (Source: friend)
Dr. Martin Rhisiart, 43, a professor of economics from Wales who advised the UK government and taught at a university, took his own life after not being able to sleep for two weeks. He had been suffering with ME for four years but was diagnosed only two weeks before his death. He felt a great deal of anxiety and depression that not being able to sleep intensified. He left goodbye notes to his parents, his two children and his wife Elena. (Source: Daily Mail.com)
John Rinkin, died in 2001 and was in his late 60's. John was from Ballina, Australia. (Source: BRAME's "Forget Me Not" list published in Australia's Country Network newsletter)
Robert Roache, died in 2001. Robert was in his 70's and lived in Casino, Australia. (Source: BRAME's "Forget Me Not" list published in Australia's Country Network newsletter)
Grace Rofe, an ME patient from Australia, died in mid-June of 1999 from an apparent heart attack although previous heart problems were unknown. Grace, in her 60's, had attended a support group just a few days before her untimely death. (Source: Journal of CFIDS/ME Country Network in Australia.)
Rhonda Denise Rolle, 52, of Albion, NY, died November 21st, 2008 of respiratory failure, one of the many complications of CFIDS/ME that she had suffered from for decades. Before the disease took such a toll on her life, Rhonda was a teacher with the Head Start Program in NY. She enjoyed fishing, making collectible porcelain dolls, reading and playing chess. A severely progressive patient, she was told to find another physician by her upstate NY specialist the last year of her life when he no longer wanted to treat CFIDS/ME patients. Rhonda died before she could find another physician. She was a loving mother of two daughters, Chalonda and Diondria. She is also survived by her husband, Livingston, her mother and other family members along with friends who will continue to miss her warmth and her courage.
Irene Kostin Romano, 61, died in February of 2014 after having bronchitis and being put on strict bedrest at her home in Wheeling, West Virginia. Irene suffered with CFIDS/ME for 38 years and wrote a blog on the internet called "Laughing From My Sickbed" as well as using twitter where she was known as "upasbook". Born in New York City, Irene loved to garden, cook and be an advocate for others with chronic illnesses. She was survived by her loving husband of 37 years, Dr. Thomas Romano as well as three children, Victoria, Nicholas and Andrew, her mother and one grandchild, and a brother along with friends. Many patients will miss reading her online blogs. Irene was described as a caring and inspirational PWC/ME. (Source: PWC and newspaper obituary)
Nathan Rosie, died on August 5th, 2013 after suffering for many years with ME. He became unable to return to university in Alberta, Canada when he became too severe. He started a support group in Vancouver, began a button campaign for ME and was also a board member of the MEFM Society of BC. His mother, Lyn, remembers him as “a beautiful and gentle soul” and how many will “miss his intellectual prowess.” (Source: MEFM Society of BC)
Mary Lee Rowe, 67, died September 2nd, 2011 "of complications of chronic fatigue syndrome", according to her death notice. Mary was a psychologist who worked with people with mental and physical disabilities in Boston, Massachusetts until she had to retire due CFIDS/ME. Her husband, Eric Rosenthal, said "Mary always advocated for the human rights of her clients." She was living in Gloucester Point, VA, where she grew up. Mary loved animals, swimming and scuba diving, horseback riding and photography. (Source: Boston Globe correspondent Amada Cedrone, VA Funeral Home)
Ann Roy, died 1994 at age 62. A resident of Quebec,Canada, Bee had CFS/FMS for many years. She was so cognitively impaired that she would go out for a walk and her niece would often have to go find her to bring her home. On one walk, in 1994, she got so disoriented that she walked into the path of a city bus and died from the resulting impact.
Ian Rudd, 41 passed away in April 2018 at his home in England. Ian became sick while attending university. His cousin wrote that he was a “positive, happy, outgoing young man.” For the first five years, he had a slow onset of CFIDS/ME until he became totally bedridden and got a diagnosis. When he had to be in a hospital when he was unable to eat or drink, the doctors and nurses had no training in this illness. When he returned home after more than one period of death that he was resuscitated from, his main carer was his mother who also has CFIDS/ME. He remained bedbound until his death.
Joanna Russ, 74, died in April of 2011 in a Tuscon hospice after suffering several strokes. She was known for her science fiction writings on male dominance. Her 1975 book, The Female Man, was the best known of her writing. She found she had to reduce her writing when her CFIDS/ME worsened with pain becoming her most dominant symptom.
Sabrina _____, 42, took her own life after being a long-term sufferer of CFIDS/ME, undergoing a quadruple bypass, and then developing an infection that wasn't treated correctly. She leaves her husband, Rich, and a teenaged son, Jarrod. (Source: WECAN)
Carl Salie, male, age unknown. Died February 26th, 1996. Cause of death: heart failure attributed to CFIDS/ME. (Source: letter from support group leader.)
Eva Sanders, 51, died in 2009 when a train at Ealing Broadway Station (UK) struck her. Eva was a schoolteacher and found she could no longer teach after not feeling well. She was later diagnosed with M.E. She left her husband, Paul, along with her beloved dog. She was described as "happy, helpful and kind" by others. (Source: Ealing Gazette)
Irma Rita Sandoz, female approximately 50 years old. Died March 1993. Cause of death: cancer, heart disease, diabetes, CFIDS/ME. Volunteered in Lafayette CFIDS support group. (Source: support group leader.)
Donald Bradford Sanford, 60, died of complications of CFIDS/ME on April 15th, 2003. Don had been rushed to the hospital having massive seizures and his heart stopped during a test. He was one of the first support group leaders in Massachusetts with a group in Wrentham and spent time reaching out to others. He was a lover of nature and mankind with a gentle heart that encompassed both. His photographs of nature were as touching and beautiful as he was. Don suffered the worst extremes of all ME symptoms. Don's physicians did not believe "CFS" existed. When he was paralyzed on one side of his body, a neurologist told him that he should now believe he had MS and the damage was permanent. Don walked into the physician's office weeks later unaided but the physician would not change his mind, merely calling his MS "atypical." Wanting to give all he could, just as he did in life, Don asked that donations at the time of his death be made to The National CFIDS Foundation. When his own organ donations were refused, his wife, knowing how much he wanted to help and still being supportive, requested slides prepared to send to the researchers in Hawaii that the foundation is currently funding. Don continued to help others even after his demise. In addition to his wife, Ann, he leaves his mother, Ruth, son Jay and stepson Bruce, two grandsons, four great grandchildren, and a brother. Don is missed by so many because he touched so many lives.
Senator Miriam Defensor Santiago, 71, died in September of 2016 after battling CFIDS/ME for many, many years. Miriam was a lawyer, a professor, a judge, philosopher, and statesman who served in all three areas of the Philippine government. She was a senator of the Philippines from 2004 until the year she died but was always outspoken about her illness of CFIDS/ME. Mariam was named by The Australian Magazine as one of The Most Powerful Women in the World in 1997. She was married to Narciso “Jun” Santiago and they had two sons, Archie and Alexander. Miriam was known as the Dragon Lady, the Platinum Lady, the Incorruptible Lady, the Tiger Lady, and the Iron Lady of Asia. She was awarded many honors and wrote about 30 books that ranged from international law to a joke book. Her death was caused by cancer that results from CFIDS/ME. She is missed by so many people in the Philippines and worldwide.
John Michael Scarito Jr., died in March in Phoenix, AZ from CFIDS/ME, a month short of his 49th birthday. Born in Hartford, CT, Johnny worked for 15 years for United Technologies and was the captain of the Tasmanian Devil paintball team before he became ill and was diagnosed with CFIDS/ME and fibromyalgia. He left his parents, John and Jean of CA, a sister, Diane Paravasini, and two brothers, Mark and Paul, as well as nephews and many friends. A memorial service is planned for December to be held in Connecticut.
Cheryl Schaverein, 64, was taking a taxi, as she had before, to a world famous beauty spa in the UK. She then had a short ride on the canal in the UK and then walked across an aqueduct alongside the canal and her taxi driver carried her bag as he was walking a few paces behind her. The driver saw a crowd gather in front of him and realized that Mrs. Schaverein had fallen and was lying under the aqueduct. Police officers applied CPR but paramedics said she died from the fall and had multiple injuries along with her CFIDS/ME. An inquest found her death to be self-inflicted.
Gail Louise Schiffbauer, You may not have known my good friend Gail, who died on May 19th, 2008. By nature she was someone who lived simply and privately. Gail loved her home in Topeka, Kansas, being with her dear husband Paul, watching the birds, and tending their cats. Before Gail became ill with CFIDS/ME and other illnesses in the early 90's, she and Paul liked to attend Renaissance festivals and psychic fairs. About seven years ago Gail was also diagnosed with leukemia. She underwent many rounds of treatment over the years until the last and experimental chemo failed to help her. Avoiding further hospitalization by having hospice at home, she died quietly with Paul and her sister, Carol Barton, sitting with her. She is also survived by her son, Taj. Despite all the terrible illnesses she suffered, Gail was a woman who loved being alive. We had met as penpals 10 years ago when she responded ardently to a short article I had written imploring ill people to please keep staying alive. The world has lost (Gail would say temporarily) a bright spirit. (Source: Judy Kruger)
Nicola Schmid, died January 23rd, 2018. She was from Germany and she studied at Universitat Augsburg. As her parents wrote, “After years of uncertainy and doubts, unending pain and unending suffering, she died with her parents and her life partner left to grieve. (Source: Phyllis. More information welcomed)
Nicola Schmidt, 43, passed away January 23rd, 2018 with her life partner and her parents by her side. She had years of pain yet it was years before Nici got a diagnosis of ME. Before she died in Germany, she wrote notes to her partner and parents thanking them for the happiness they brought to her life.
Janice Schneier, passed away June 12th, 2014 due to complications from CFIDS and Fibromyalgia. Janice was born June 30th, 1962 in North Hollywood, CA and raised in Tarzana, CA. She attended Taft High School and Pierce College in Woodland Hills, CA. She worked as the Secretary to the President of The Musicians' Union, Local 47, until illness forced her to retire. She is survived by her parents, Fay and Edward, sister Sharlene Schneier (Kirk Hylan), niece Jessi Levine, sister Corinne Burke (Richard), nephew Dylan Burke, Aunt Anita Busby (Lee), cousins Sunny Kraye, Jeff Steinhardt, Barry Steinhardt (Patrice), Scott Steinhardt (Debbie), Marla Chapek (Greg), Sherry Rosenberg (Marc), Elaine Lucia (Richard), Howard Abrams, Bonnie Lewis (Sandy), Steve Schneier, Stuart Schneier (Joann), Jeff Fienberg (Nancy), Ron Fienberg (Barbara) and second & third cousins. Janice was passionate about rescuing animals and finding happy homes for them. She raised, nurtured and loved her many 4 legged children. Another Angel receives her wings — enjoy your freedom, joy and peace, our sweet, beautiful Janice. You are forever in our hearts. A private ceremony will be held for the family. In lieu of flowers, donations in Janice's memory can be made to www.ncf-net.org (CFIDS) or PETA. (source: Published in the Los Angeles Times)
Edwina Schwegmann, 66, died in late March of 2019. “Wma” was a wonderful friend with great humor and spirit and helped many in her home state of Louisiana as well as many others. A diabetic PWC/ME, Wina was hospitalized with a foot infection for two weeks which spread to her bones. The staff suggested a nursing home which she rejected and went home. She died in her sleep not long after. She is survived by one son since her husband and other son died years earlier. She was a member of the NCF since its inception, wrote articles for this newsletter and is and will continue to be missed by many.
Peter James Sciara, Ph.D., 66, who lived in Oakland, CA died at his home and his body was discovered about a month after his demise by police who were following up on others unable to contact him. Years ago, Peter was misdiagnosed with multiple sclerosis and with an Alzheimer's-like condition until he was finally diagnosed with CFIDS/ME. He was born in England and moved to the United States where he spent over 20 years as a social worker before the illness took control of his body. His pain was so intense that an epidermal was used to block it. An autopsy showed that the cause of his demise was cardiac. (Source: fellow patients)
Carl Scott, 33, died suddenly in South Wales, UK after suffering with ME for 17 years. The cause of death was listed as a Coxackie-b virus which caused his heart to stop. He had tested positive to Coxackie-b virus at the onset of ME. Carl is sorely missed by his large family and, especially, by his parents and carers, Gaynor and John Scott. His sudden and premature passing was a great shock to the community. (Source: Laura Jones)
Crystal Sedberry, female, age unknown. Died March 23rd, 1995. Cause of death: breast cancer. Had CFIDS/ME for many years. Occupation: Licensed Vocational Nurse. (Source: letter from a friend.)
Nelson Selvon, D.O., died of a massive heart attack at the age of 62 on February 10, 2003. He had several degrees and treated many patients with CFIDS/ME. He was in touch with Paul Cheney, M.D., Ph.D. and tried Dr. Cheney's protocol. One of his many grateful patients said of the Michigan doctor, "He was wonderful, but disgusted with the coverup!" Dr. Selvon leaves a wife and several daughters who also are afflicted with CFIDS/ME. (source: patient)
Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner's report said, ""Death due to Chronic Fatigue Syndrome...1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma." She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.
Gloria Senuta, a resident of Illinois, died of unknown causes, assumed to be a result of CFIDS/ME, at her home in 2003. (Source: Carol Howard, Pres., Chicago CFS Assoc.)
Regen Tamra Shapiro, 44, died unexpectedly at home in Jacksonville, Florida, leaving her husband, Harry, her two young children and her mother and brother shocked and upset. She was a warm and loving mother and was well known in her community. Despite her CFIDS/ME diagnosis, Regen had played a key role in helping her father found an academy for people of their faith. She died in late November and is missed by her many friends as well as her family.
Ted Shaw, took his own life in March of 2019. Originally from the U.S., Ted was a teacher who moved to Mount Morgan in Queensland, Australia and got married. After teaching for many years, Ted got sick with ME/CFIDS and was unable to teach or live a normal life. He also was divorced after the illness ruined his life.
Barry Sheene, 52, died of complications of CFIDS/ME in October of 2002 at his Gold Coast home in Australia. He had been diagnosed with cancer of the upper stomach and esophagus months earlier. Barry was a two time world motorcycle champion and suffered from CFIDS/ME for more than a decade. On one television program on "CFS" in 1998, Barry mentioned that his long history of accidents, including having both legs smashed, were "a piece of cake" compared to having CFIDS/ME.
Shelia ______, female in her twenties. Died June 1997. Cause of death: suicide. (Source: CFS-L posting.)
John Fisk Sheldon, M.D., 96, died in Stockton, CA in May of 2012. Born in Kansas, John grew up in California, graduated from USC’s School of Medicine and served in the Navy seeing action in Saipan and Okinawa. He was married to Marieeta Huron for 39 years until her demise in 1985. He served as a missionary and later opened a medical office where he practiced for 53 years. Dr. Sheldon wrote an article for the San Joaquin Physician explaining the difficult diagnosis of CFIDS/ME/FMS and was a member of the local support group for many years as he suffered from those illnesses himself. He left a sister, two children and three grandchildren. (Source: San Joaquin CFIDS/FM Support Group/CA, media)
Cindy Siegal Sheplar, 62, died in December of 2019, leaving her mother, Zelda Siegel, her husband, David Shepler, two sisters and one brother. Cindy graduated high school in Tennessee and moved across the country to California to attend San Francisco State University where she became a summa cum laude graduate. She worked for Cigna but ME/CFIDS hit her hard and she had to move back to Knoxville. She stayed active in volunteer work and met her husband. She remained very active as long as she was able and is missed by her many friends and relatives.
Jeffrey A. Sherkey, M.D., died on June 20th, 2004 from a brain tumor. He was comatose during the last two weeks of his life. Dr. Sherkey had ME/CFIDS for many years and treated hundreds with the same disease in Toronto, Ontario, Canada. He was a member of the Canadian ME/CFS Working Case Review Definition and Treatment Protocol. Dr. Sherkey left a wife, Cheryl Appell, a daughter, Mariam, and many other loving family members as well as hundreds of patients who miss his care, support, compassion and hope.
Lewis E. Shuman, 66, died on June 29th, 2006 from complications of ME/CFIDS. On a ventilator prior to his last month of life and in severe pain, he was diagnosed first with prostate cancer and then with lung cancer. His only close family member, his brother Jared, offered him little support. Lew spent his last week alive in a coma. He got validation as a long-term member of the Rochester, NY support group where members found him a "gentle, loving angel" and "a fascinating man." Lew, who spoke many languages, taught middle school and devoted time to his love of antiques. He spent several years in Switzerland and is remembered and missed by many of his former students in the Rochester, NY area as well as his support group friends.
Carol Sieverling, died in the first month of 2021 in a hospital. She had stage 4 myeloma and was receiving chemo and radiation. Carol had CFIDS/ME for many years and led a support group in the Dallas/Fort Worth area in Texas. Her sister spent the last few months of Carol’s life with her. Carol was a patient of Dr. Paul Cheney for years but her illness, of course, could not be helped. For her memorial, Dr. Cheney wrote, “I will always remember her deep caring of the less fortunate and the misunderstood.” Years earlier, the Dallas/Fort Worth CFIDS/FM Support Group gave a plaque to Carol that read, “For all of the times in pain and feeling lost, you were there on the phone. For all of us that needed answers, you were the one that showed us the path. For all of us who owe you so much, thank you is not nearly enough.” (Source: fellow patient K.S. and online memorial)
Susan Simon, Female, approx. 50. Died 1993. Long term CFIDS/ME patient. Cause of death: hit by a truck while crossing the street in her wheelchair in NYC when planning to see a lawyer about suing the NIH's Stephen Straus. (Source: Osler's Web by Hillary Johnson.)
Niccola Simpson, Died of a heart attack in March of 2010. Niccola lived in Glasgow and had ME since 1987. Eight years later, she worsened and was forced to stop working as a nurse. Years before, she was active in show-jumping and training and was a well-known cake baker as well as a volunteer for the ME Association in the UK. (Source: ME Association, UK)
Donna Singletary, died in February of 2001 from severe complications of CFIDS/ME. Donna, a long-term patient, thought she was having a panic attack at home and asked her husband to pray for her. He performed CPR. An autopsy showed a cardiac embolism was the cause. An active member of her support group, Donna was caring and loving, calling those in particular need often. Her husband, at her funeral, recalled how he had given her a kiss when he was six years old and they were at a playground, and then ran! He learned not to run and was very supportive of her and the immense pain that she suffered. Donna leaves her husband, Ron, two sons and a granddaughter, Samantha.
Kelly Joy Sirles, 54, died in early December, 2012 from cancer that was end-stage CFIDS/ME. Kelly attended Roosevelt University and was in many of their drama productions. She became a model and, in the 1970’s, was crowned “Miss Ford City”. This Joliet, Illinois resident had a wonderful sense of humor that helped her cope with so many of the indignities brought on by the disease. Kelly was a fighter and a compassionate friend to others. She left her husband, Chris Gabrioto. (Source: CFSCC)
Margaret Slahoe, DMD, was 43 and died on March 31st, 1999. She had been a PWC since 1992 and died of CFIDS related causes after a lengthy illness, according to the obituary. Her doctor was one who didn't believe in CFIDS/ME and would not prescribe the necessary pain medication. A good friend believes Peg died due to the ignorance of the medical community. Peg lived in Pennsylvania. (Source: telephone call and obituary)
Arnold Smith, died of complications of CFIDS/ME in 1994 and is remembered in the Forget Me Not list of BRAME's representatives in Australia.
Fiona Smith, 31, took her own life in November of 2001 after suffering with ME for nearly a decade in the UK. A landscape artist who was forced to withdraw from her post graduate studies, she got sick in 1992 but was not diagnosed for another two years. By that time, she was bedridden and unable to feed or wash herself in the small village of Bristol. Her mother, Trish, found physicians and the health service refusing to help. She called her "my best friend, adviser and confidante." (Source: Daily Mail)
Sharyn Smith, female in her fifties. Died May 1997. Had CFIDS/ME between 10 and 20 years. Cause of death: Massive coronary. Had been house-bound for many years with no history of coronary problems. New Hampshire resident. (Source: support group leader from NH)
Victor Smith, 50, a resident of England, took his own life while in Moscow after suffering from CFIDS/ME for many years. Victor had relatives in Scotland and was part of an advocacy circle on Facebook. (Source: Kasey Fatooh
Gail Snotherly, 58, of Burlington, North Carolina, died at a Greensboro, NC hospital on December 8th, 2012. Formally a social worker, Gail had suffered for most of her life with CFIDS/ME and kept in touch with other patients. She leaves her parents and a brother and his wife along with a niece and nephew. Gail was a patient of Charles W. Lapp, MD. She will be missed by many. (Source: fellow PWC/ME, obituary).
Matthew Brandon Sooy, 17, died April 19th, 1997. He got what was thought to be the flu in 1992 and saw 15 doctors until he was finally diagnosed with CFIDS. He missed so much school from the 7th grade until 11th grade when he could attend much more. He seemed to be in good health then and running around with friends. At a sleepover at one friend’s house, he woke his friend and asked him to call 911 and then he collapsed. Paramedics arrived within minutes but could not revive him. An autopsy claimed he died of natural causes. We were told, “Matt was brilliant, funny, and the kindest human I’ve ever met.” He is still missed and remembered by many.
Barbara Staples, a long-term CFIDS/ME/FMS patient in her 40s died of an apparent blood clot following a severe fracture of her leg on September 28, 1999. Barbara was known online for her eloquent posts to lists and had a number of good friends. Just before her death, she had moved with her family from E. Sandwich, Massachusetts to West Virginia. She is sorely missed by both those in the patient community as well as her family. Barbara was a member of The National CFIDS Foundation.
Sheila Y. Stevens, 71, died after suffering for decades from CFIDS/ME. Along with a group of others with the illness, she helped form a support group in Miami, Florida in 1988. When the leader of that group moved, Sheila took over and began a monthly newsletter. She also began a group online. As her illness progressed, Sheila let another take over her position. (Source: several patients)
Marilyn J. Stewart, 63, died on August 21st, 2003, in Venice, Florida, from lung and brain cancer, an outcome of her CFIDS/ME. Marilyn, a valued member of The National CFIDS Foundation, Inc., was an artist and a long time sufferer of CFIDS/ME. Marilyn organized one of the early conferences held in Florida on CFIDS/ME where, for the first time, Dr. Elaine DeFreitas explained her discoveries. She also conceived of and brought to fruition a calendar project to raise awareness and funds for the disease and continued to help in many ways through the years. Marilyn was an "Essential Volunteer" for The National CFIDS Foundation and is missed by us all. Her final gift to the patients was tissue samples for ongoing research. One of the first support group leaders in Florida, Marilyn was survived by her mother, F. Marian Stewart, three brothers, and 10 nieces and nephews.
Sherry Wagner Stockton, died on July 31st, 2002. Sherry was the President of the Atlanta CFIDS Support Group in the late 1980's and early 90's. An advocate and tireless worker for others with CFIDS/ME, Sherry had suffered with the illness for over 25 years. Formally a nurse certified in neonatology, Sherry worked primarily as a pediatric/neonatal intensive care nurse. She was in the first Ampligen trial under Paul Cheney, M.D. Sherry leaves her husband, Herbert, two sons, Christopher, 21, and Kevin, 19, her mother Doris Wagner, four brothers (Danny, Jerry, Pat, and Jack), and her sister Roseanne Harris. She was taken to the hospital in May and they found infiltration in her lungs. Numerous clear scans later, she was moved to a recuperative center where she, again, began failing. Transferred back to the hospital, she died of 4th stage lung cancer. Helping others even after her death, donations in her memory were sent to The National CFIDS Foundation's matching fundraiser.
Philip Stoller, who had CFIDS/ME for 5 years, died in 2000 of diabetes, which was undiagnosed. His wife hopes that his death was not in vain and that physicians will look beyond CFIDS/ME for other diseases or conditions. Philip was from Arizona.
Janice Fulwell Storey, 64, died May 23rd, 2016 after suffering for 31 years with CFIDS/ME. Janice is missed by many friends and family including her two sons, Philip and Adam. Janice was from England and was active in a charity for her illness. (Source: Sunderland Echo)
Daniel Torkelson Strenge, 31, died December 21st, 2014, in Sartell, Minnesota following a very painful battle with CFIDS/ME. He was born in Fridley and lived in St. Paul and then in Sartell where he was active in three sports teams in high school as well as the student council and the National Honor Society. Daniel went on to graduate with honors from Harvey Mudd College. He worked as a research analyst and a commondities trader and was known as highly intelligent, loyal and compassionate. His parents and a brother survived him along with many other relatives and friends. (Source: Phyllis, obituary)
Charles Striffler, male, age unknown, date of death unknown. Died of massive liver and spleen damage in NYC, NY. He had been employed at a workplace where seven other people now suffer from CFIDS/ME. (Source: letter from a colleague.)
Lindsay Sturm, 32, died in December of 2020 after suffering with CFIDS/ME for 7 years. Lindsay was an animal lover and had thought about becoming a veterinarian but changed her mind and studied cognitive neuroscience at Columbia University. When she first got sick, she saw multiple doctors but they could not diagnose her, so she did the research on her own and diagnosed herself. The last two years of her life found her housebound and often bedbound until she died in her sleep.
Margaret Sullivan, 58, died in March, 2011 after suffering from CFIDS/ME for many years along with severe dystonia that was attributed to RSD. She was a vocal peace activist during the Vietnam War and kept in touch with many of the friends she met during her life. Margaret was a teacher and when she first became ill, she was a mother with a young son. She grew up in Detroit and lived in Grand Rapids for many years. A very insightful and intuitive person, Margaret seemed to know when the end was near. She left a son and grandson but did not live long enough to see her second grandchild. She continues to be remembered by many. (Source: friends)
Donna Sundberg, female, age unknown. Died Nov. 1995. Cause of death: lethal ingestion of narcotics and analgesics. (Source: CFS newsletter.)
Nancy Elizabeth Taylor, 73, died July 21st, 2007. Nancy first became ill in 1977 following a blood transfusion but was not diagnosed with CFIDS/ME until 1986. In 1989, she was among the first 15 patients to receive Ampligen for 16 weeks in a pilot trial. Nancy and her husband provided funding for many CFIDS/ME projects including the National CFIDS Foundation's research endeavors along with supporting the Tulsa (OK) Ballet, the Tulsa Philharmonic, domestic violence intervention and other worthy endeavors. A member of the National CFIDS Foundation since its inception, Nancy found herself only able to be functional for a few hours a day well over a decade ago. The time shortened until she was not capable of taking care of herself and was suffering a great deal but she remained courageous. The graceful and compassionate Nancy left her husband of 54 years, Edward L. Taylor, her children Edward Taylor, M.D., Suzanne Taylor, and Stephen Taylor along with 5 grandchildren, Lauren, Courtney, Brittany, Stephen, and Katie. Reaching out to others even after death, donations in Nancy's memory were made to the NCF earmarked for research. (Source: Tulsa World Newspaper)
Victoria Kristal Taylor, 28, died on April 8th, 2016, in Houston, TX after suffering for many years from CFIDS/ME. She is missed by her four children: Bermissia Landcaster, Deshannen McClain, Glendoria Taylor and Geno Taylor, her parents, a sister and three brothers along with many other relatives and friends.
Victoria R. Taylor, 28, died in April of 2013 while trying to deal with a severe case of CFIDS/ME. (Any further information is welcomed.)
Ted ____ was an extremely thin CFIDS/ME patient who had no prior heart problems. He was a member of the Worcester, MA CFIDS/FMS Support Group and a long-term patient who died of a massive coronary. (Source: support group leader.)
Tracy Temp: female, 29 years old. Died September 26th, 1991. Cause of death: self-induced overdose. Occupation: formerly a special education teacher. Tracy tried, in vain, to get adequate help for her pain. Her physicians did not take her seriously enough. The documentary has her mother reading aloud a portion of her suicide note addressed to her physician where she said, "Maybe today will be tolerable." She was told, repeatedly, that her illness was "all in her head" and was sick for 1,115 working days. When the disease struck, Tracy was one half way through her Master's degree. Her physician, on the documentary, admits he failed her. (Source: Living Hell, a documentary film.)
Pamela Thomas, 59, from Marea Meadows, Heacham, England, was discovered dead by her husband, Aubrey, on May 2, 2011. She had been diagnosed with "anxiety and depression in 1994" but was later diagnosed with chronic fatigue syndrome. However, she remained on prescribed antidepressants until shooting herself using her husband's firearm. Norfolk coroner, William Armstrong, gave a verdict of suicide from anxiety and depression and asked for a review of firearm licenses instead of a review of misdiagnosis. (Source: Lynn News, UK)
Dick Thomas, of Stockton, CA, was an active member of the San Joaquin CFIDS/FMS support group from 1987 until 1993. He had a wonderful sense of humor and great compassion for others. Dick exhibited strength and dignity until he died from complications of CFIDS in St. Joseph's Medical Center. (Source: San Joaquin CFIDS/FMS Support Group)
Rabbi Chana Timoner: female, 46 years old. Died 1988. First woman rabbi to be an active army chaplain . An outspoken advocate for oppressed, she was forced to leave the army after the onset of CFIDS/ME. Cause of death: suicide. (Source: newspaper obits, NY Times, Hartford Current.)
Olwen Tinnion, died in August of 2018 from pancreatitis. She had lived with a severe case of CFIDS/ME for many years. She was active in The York ME Community and was well liked by many. One patient felt, “The world will be a poorer and sadder place without Olwen in it.”
Taffy Todd, 64, born Alison Stuart died in 2009 after suffering for many years with CFIDS/ME. Taffy grew up in Pennsylvania, attended high school in New Jersey and graduated college in Wisconsin. She was the family's geneologist and was a writer. Taffy was humorous and compassionate and loved books. She left her partner, Bill, a daughter, mother and other relatives. A son, Stuart, predeceased her. A memorial service was held in Vermont. (Source: Jennifer Todd Taylor, daughter)
Kevin E. Tripp, 57, was murdered on June 12th in a case of mistaken identity while standing in a checkout line in a store in south London. One violent punch knocked him unconscious. Although resusitated at a hospital, he lapsed into a coma and died shortly afterward. ME found Kevin in 1988 when he was in his late 30's. He was a structural engineer, had a relationship he cherished and was active physically at the time. He recovered only to again have the same symptoms the following year but again seemed to recover. By 1990, ME took over his life in earnest and, four years later, Kevin found he could "hardly walk at all." He began a support group for ME sufferers to inform others that victims of ME that, along with the symptoms, patients lose their jobs, the friends and their "ability to do anything physical." He explained, "If we feel good, we do things. If we feel wretched, we don't because we can't. It's as simple as that." Kevin left his 5 year old daughter and his partner, Josephine, as well as many who cherished his truthful advocacy.
Barbara Turnbull, 84, died on December 12, 2018 after suffering for years from CFIDS/ME. She founded the first support group for ME in North Wales and ran it for many years. In support of Barbara, her family has requested no flowers at her fumeral but, instead, requested donations to the support group that she founded.
Annette Upton, 36, died after suffering with a severe case of ME for many years. Annette lived with her parents in England and her weight was so low that she was considered severely emaciated. She had been hospitalized for this twice and saw a psychiatrist months before her death who found she had a swallowing problem but had no eating disorder and ruled out any depression. At an inquest, her father stated that ME "is a serious problem and nothing is really been done to address it." (Source: Norwalk, UK, Evening News)
Wilma Urbanek, of Illinois, died in 2003 of complications of CFIDS/ME, i.e. cancer. (Source: Carol Howard, Pres., Chicago CFS Assoc.)
Melinda Vadas Ph.D. died on November 24th, 2002 of causes related to CFIDS/ME, officially kidney failure. Melinda was in her early 50's and was a long-term sufferer of CFIDS/ME. A former professor of philosophy, she was an NCF member since our inception and a staunch and untiring advocate who worked to help others who suffered from the illness. She was, as one friend said, "One of our ministering angels" who was loved and appreciated by many for her love of her "kids," her willingness to help so many, and her warm heart that so readily embraced others. As one friend said, she was a "bright light in the dark world of CFIDS." Melinda, like so many, found her marriage failed after she got sick, yet she never stopped reaching out to others and was always one you could count on. (Source: CFIDSERS and NC Support Group)
Marie Vale: Date of death unknown. Died at age 47 from leukemia, now believed to be a complication of CFIDS/ME. Marie was the director of internal affairs for NASA with a high security clearance. She went to the NIH (National Institutes of Health) in 1982 for a diagnosis but was given none. In 1986, she got a copy of her records that indicated she had "Chronic Epstein-Barr Virus," now known as CFS. A few days before her death, she told a friend that this was being covered up from "very high up." (Source: close friend who now suffers from CFIDS/ME.)
Beth Ann van der Berg, 51, died on October 15th, 2006. She had been diagnosed in the late 1980's while living in Minnesota. Months before her death, she was challenged with many symptoms and was hospitalized several times. No full autopsy was done. Beth left her husband, Wim and many friends with CFIDS/ME when she died at her home in Wisconsin. (Source: friend)
Michele M. Van Horn, 66, passed away in the early fall of 2018. She excelled as a nurse until CFIDS/ME devastated her life. Michele lived in Florissant, MO and is missed by her husband, Ronald, along with other family members and many, many friends. (Source: Kathy Collett and newspaper announcement)
Jan van Roijen, 81, died December 5th, 2018 of kidney failure in a nursing home he had been in for months. Jan was a well- known and talented Dutch actor who shared his knowledge of ME via a bulletin he put out. After becoming sick with ME, he began to lose many friends but ME patients around the world were sad to hear of his passing as they remembered all of his postings about ME on the internet.
Susan Vasbinder took her own life on March 12th, 2002 after a long and painful bout of ME. Susan was born in Ohio and was a student at Kent State in 1970 where the events spurred her on to activism (four students were killed by the National Guard). She left her life partner, Charlie, and many friends and colleagues who all miss her powerful spirit.
Judy Vaughn died on October 21st, 2002 at age 62. Judy was a member of The National CFIDS Foundation since its inception. She died in a Boston hospital of cardiac arrest during a heart test. Judy was a long-term and severe victim of CFIDS/ME who had some members that were unsupportive, yet she remained a fighter to the end. She left two loving adult sons, Damon and Tyler, and her friend from childhood, Liz, who is a fellow sufferer who said, "When I was down, she was right there for me." Judy will be missed by so many others whose lives she touched. She lived in Marshfield, MA.
Jackie Veeke died at age 39 on April 11th, 2000 of a pulmonary embolus. Jackie was one of the founders of the Evanston, Illinois chapter of CFIDS/ME in the mid 80s and was a co-leader of the group as well as having accepted a voluntary position with the state group when she died. She was a registered nurse yet found, with her illness, many friends and family members did not understand her pain and suffering.
Arlene Bazley Vermaak died August 29th, 2014. She founded and ran the ME Association for South Africa in Umhiang Rocks for a decade after being diagnosed with the illness. Arlene put out a newsletter for ME. She left her husband, Peter, her two children, Claire and Leigh, along with sister, Jill and a brother, Gavin. (Source: IACFS newsletter)
Eve Vind died in late June, 2002. Eve had severe multiple chemical sensitivities (environmental illness) along with a heart condition that further complicated her poor health. She lived in Texas with her husband, Gerald, who was very supportive. The cause of death was congestive heart failure. (Source: Kathleen Houghton)
Karen Lynn Walker: female, 46 years old. Died March, 1993. She fought for a diagnosis, for disability, for treatment. A warm, active, caring artist, she willed 1/3 of her estate to help others with this illness. The money went to CFIDSERS, the CFIDS Emergency Relief Services, and to the National CFIDS Foundation where they established a research fund in her memory.
Kathleen Walker, from Washington, died on the 24th of January, 2004. She was in her 40's and had suffered from CFIDS/ME for over a decade. She took an intentional overdose of medication when she couldn't handle being in constant pain any longer. Kathleen loved life but hated the way her own life had turned out. (Source: her roomate)
Evalina Wallace valiantly battled ME/CFIDS for 18 years before succumbing to ovarian cancer at age 47 in 2001 in Taunton. Evi was a beautiful, intelligent and soft-spoken woman admired and loved by many who knew her. She came down with what she thought was the flu but kept relapsing. During that time, she met and married her husband, Joseph, who was attracted to her sweetness and who witnessed her courageous battle with the devastating disease. A member of the Board of Directors of the Massachusetts CFIDS Association, Evi was a representative of the general membership until the resignation of the first president in 1997. She tried many different methods to see if they would help including nutritional protocols. She is missed greatly by her husband as well as a daughter, Erica, and numerous friends. (Source: Gail Kansky)
Deborah Ward, 46, died in the spring of 2000. Her death was sudden after suffering from CFIDS/ME for many years. (Source: Anne-Marie Vidal)
JR Weber, male age 18, died January 12th, 2003, at home in Grants Pass, OR from acute myolytic leukemia as a result of chemo regimen during Burkitt's Lymphoma at age 15 and complications of CFIDS/ME that he had been diagnosed with at age 7. He is survived by his mother, Sue Tobias, a PWME/C and facilitator of local support group, 3 brothers and a sister. He had been home schooled, loved to play his drums, and designed two web sites. He had turned 18 on December 12 and had never wanted the first chemo because his quality of life was so poor that he just wanted out of his body and to be with the Lord, but the treating facility threatened to take custody in spite of his wishes. NY children's services had tried to have him removed from his home at age 7 because of his inability to attend school but decided charges were unfounded when he remained ahead of his class in spite of his lack of attendance and illness. He had finished his home schooling and was preparing to take his GED when he was diagnosed with cancer. His probing mind and delightful wit are sorely missed by his Mom but she knows he is no longer suffering from the ravages of this illness. (Source: Sue Tobias, mother)
Victoria Webster, 17, died of ME in September of 2011. She had the disease since she was a baby although it was not correctly diagnosed until she was 13 years old. Victoria suffered severely with ME while her family found themselves battling various agencies. She could not tolerate any light or noise, had severe dietary problems and even a slight touch became extremely painful to her. The night she died, she complained of bad back and eye pain and then had trouble breathing. When an ambulance was called, paramedics found her in cardiac arrest. (Souce: Burton Mail)
Candace Dinardi Weinrich, 45, of Littleton, CO, died early in August of 2001. Candace had CFIDS/ME/FMS and struggled to have a rewarding life. Candace touched many people with her unique wit. A pianist in her spare time, Candace was an engineer specializing in microchip design. Her family requested donations to the Candace Dinardi Memorial Fund be sent to CFIDSERS, a worthwhile charity.
Naomi Weisstein, Ph.D. 75, passed away March 28th, 2015. Her death was due, according to her husband, Jesse Lemisch, to the “ignorance and contempt for her underlying CFIDS/ME” by New York City’s Lenox Hill Hospital where she had been diagnosed with ovarian cancer. Dr. Weisstein graduated Phi Beta Kappa from Wellesley College and received a PhD in Psychology from Harvard Unviersity. She took a fellowship and taught at the University of Chicago and Loyola University as well as the State College of New York in Buffalo when, in 1980, she came down with CFIDS/ME and became completely bedridden by 1983. Naomi, who had written over 60 articles as a professor of psychology and neuroscientist, encountered sexism all too often and fought against it with both intelligence and humor, even founding the Chicago Women’s Rock Band. A court case brought the bedridden patient 24-hour nursing care until her death. (Sources: Maryannn Spurgin, dear friend of deceased and others)
Sandra L. Welker died on November 24th, 1995 of a brain tumor. She was 36 and would have been eligible for gene therapy (anti-herpes drugs) within weeks. Her sister, within a few years, was diagnosed with CFIDS/ME. Sandra had gioblastoma multiform and lived just over 100 days after her diagnosis.
Lyn Wenzell, 57, had her life taken from her by her husband of 29 years. Lyn was able to work despite suffering from fibromyalgia. Her husband was found guilty of second degree murder. Lynn died in July of 1999.
Emily Green Weston, 77, died July 11th, 2005. Although Emily was born in Connecticut, she moved to Stockton, CA as a young girl. After years as an elementary school teacher, her beloved career came to an end when she became disabled with CFIDS/ME. Emily was instrumental in beginning the local support group and for years she was the telephone contact for the group, keeping careful notes on those who reached out to her. A member of National CFIDS Foundation, Emily left three children and four grandchildren and will be missed by so many whose lives she touched with her gentle manner.
Pamela Weston, 88, from the U.K., died with help from the Dignitas clinic in Switzerland in 2009. She was diagnosed with M.E. in London and it destroyed her life. She had attended the Royal Academy of Music and got a scholarship to the Guildhall School of Music. Just two years later, she went on to teach at Guildhall for 17 years! She wrote books about the clarinet and traveled the world as well as teaching privately. Although she had no relatives, she had many friends and was active and happy but, as she wrote, “M.E. put a stop to everything.” She even experienced 4 heart attacks after her diagnosis. (Source: UK Times Online Newspaper and Pamela’s own diary)
Patricia (Trish) White died in late November of 2005. She was known as "Pawpurr256" online and was a frequent contributor to a list on experimental treatments and tried several remedies. Trish got CFIDS/ME shortly after she graduated from college and was in her mid-forties when she died of brain cancer. She had received chemotherapy and other treatments for the cancer for years before she died and wrote of "the nice energy boost" she got immediately after her chemo sessions as well as "seep cycles" being the most normal that she recalled. At the time of her death, she was living in Phoenix, AZ.
Kathleen Wilkinson died in October of 2001 by her own hand after suffering for decades with CFIDS/ME. Kathleen had told others that she wanted to be able to end her life while she still had the ability to do so. She was from Salem, MA and was a member of a state support group. (Source: Anne-Marie Vidal)
Deborah D. Williams died in the late winter of 1999 by her own hand. She was from Pasadena, CA, got poor medical care and was a long-term PWC. (Source: CA support group leader.)
Kari Lynn Wilson, M.D. 33, died in July of 2014 of CFIDS/ME. Dr. Wilson was born in California and graduated from UC Davis. She pursued her dream of becoming a physician after attending Wake Forest University’s Bowman Gray School of Medicine. After a residency, Kari had a family practice in Del Mar and at a military base in Kaneoha Bay, Hawaii. While working with marine families, she got the H1N1 flu and her compromised immune system was severely attacked which made her suffer for years from CFIDS/ME until her death. Missed by her parents, family members and many friends, a memorial celebration of Kari’s life was held in August at UC Davis. (Source: obituary and family member)
Klara Jancikova Wilson, M.D. 44, died on August 27th, 2018 in her native Czech Republic. She was highly creative and began a blog entitled “Girl About the House”. Klara is remembered and missed by many including the friends she made on Facebook. One memorial said she had “a wicked sense of humor”. She battled CFIDS/ME for 16 years and spent her last year totally bedbound. When she first got sick, no doctor in the hospital could diagnose her. She and her beloved Rob found the answer on YouTube.
Dave Winslow was a long-term PWC who died of a massive coronary in May of 1999. He was in his early 40s and had lost his job, wife, and family due to his illness. He had seen his doctor just days before his death with no indications of prior cardiac problems. Dave was in his early 40s and died in May of 1999. He was a resident of Massachusetts. (Source: The National Forum)
Marlisa Caroline Wolfe, 50, took her own life on December 14th, 1984, after her CFIDS symptoms increased such as vertigo, vision loss and increasing pain. She was a hairdresser in Canada as well as a dancer and singer, married and had three children before her illness led to divorce. (Source: Valerie Free)
Joanna Wright, 33, took her own life in 2007 after being diagnosed with M.E. less than year before and found there was little to help. Joanna left her partner, Ywain Prior, and her parents. Her father said, "It bears out the serousness of M.E. and it does emphasise how important it is that more research is carried out. It can strike the fittest of people. It just added to Joanna's frustration that she couldn't do what she used to do." (Source: Eastern Daily News, England)
Amberlin Wu, died in early October of 2011. She was active in advocacy and in a local support group in Mountain View, CA. Amber promoted media awareness and tried to do all she could for CFIDS/ME. Less than a year before she died, she welcomed the local support group members to a holiday party in her home. Many of those patients and friends she left behind lit a candle in her memory as Amberlin's slogan was "Be a Light". (Source: fellow PWC/ME)
David Steven Wyle, 52, died on June 1st, 2005 after being diagnosed just three months before with a fast acting lung cancer. David had suffered for years from CFIDS/ME. He was a technical writer in Palo Alto, Los Angeles, Woodside, Los Altos and Mountain View, California. A talented pianist, he was a kind, generous and loving man who made friends easily and was interested in a broad array of topics. David was born in Connecticut but had lived in California since his childhood. He leaves his sister, Karen and his parents, Charley and Bronia Wyle and is missed by many. Memorial donations were directed toward research via the National CFIDS Foundation, Inc. (Source: friends, family)
Ian Yanner died at age 48 from ME/cancer in 2002. Ian was from Palmerston N.T. in Australia. (Source: www.nor.com.au)
Karen Yeadon died on May 4th, 2003 at age 37 by her own hand after suffering from CFIDS/ME. She was the daughter of Joyce and Peter Yeadon and had been sick for 11 years. She was confined to her room at the end with very progressive symptoms and found it difficult to even watch TV or to eat. Karen is remembered for her wit, generosity, and concern for others. (source: ACT CFIDS/ME Society)
William J. Zimmer, 46, died in April of 2004 after being diagnosed with CFIDS/ME in the 1980’s. The autopsy results were not conclusive and his physician, Anthony Komaroff, M.D., has sent samples for further investigation. Bill was born in Massachusetts, attended high school and college in Ohio and was an architect who also volunteered for Habitat for Humanity. He lived in Brookline, MA. Bill enjoyed skiing, sailing and cycling before his illness overtook him. He leaves four sisters and two brothers as well as his parents. Bill was known as a special person and will be remembered for his courage and his compassion as well as his love of life. (Source: PWME/C friend)
Rudy M. Zingler, 66, died on July 8th, 2006 after a long and courageous battle with CFIDS/ME and MCS. Just a month before, he was rushed to the emergency room with very high blood pressure and had been continually getting worse. Before the disease struck, Rudy was a machinist with Eastman Kodak and a semi-pro boxer. He was an avid runner who ran in the Boston Marathon several times as well as an environmentalist and avid gardener with an organic garden and raising his own chickens. He was heartened by the research being done for CFIDS/ME and participated in research trials. A compassionate man, Rudy was always sharing information with his CFIDS/ME family hoping to help others. Like many patients, his family did not stay together once the illness struck, but he retained a wonderful sense of humor. He was a lover of the classics and poetry and was intuitive and warm yet practical with impeccable integrity. Rudy is survived by a son, Rudy "Mike", a daughter Alana, a brother and sister and grandchildren as well as great grandchildren. He is keenly missed by many friends in the Kendall-Rochester, NY area whose lives he touched. His memorial service had an overflow attendance of those who miss him and continue to keenly miss him today.
Marcie Lynn Zinn, Ph.D., 68, died in a Chicago hospital on December 28th, 2019 of sudden heart failure. Diagnosed with CFIDS/ME in 2009, she joined Stanford Medical School’s CFS Initiative where her goal was to study cognitive impairment and neurological issues. Her work may lead to treatments in the future. She is missed by her husband, Mark, along with her brother and many friends and colleagues. She is also missed by the many animal pets she owned including a bird, several cats and a service dog.