By Cheryl Tai

From Spring 2012 Forum

Before I send away for my leaflets to distribute or get my posters ready for Awareness Day on May 12th, I stop to reflect on how many things we should remember about our disease and what has already taken place. Before you and I got sick, there were many patients trying to forge ahead in order to make our journey easier. There was science that was carefully replicated and became fact. There were so many who stood up and tried to make a difference. This year, I spent my time reflecting on how much those who had suffered before us had tried to live their lives despite the suffering brought on by CFIDS/ME. The National CFIDS Foundation made this easier for me by continuing to compile a list of those who passed on before us for, as we are reminded by the Memorial List found on the NCF website where "only a breath divides" us.

I went through the Memorial List name by name. The Memorial List was used years ago by DePaul University's Leonard Jason, Ph.D. who found all had died many years before they should have. In spite of this, CFIDS/ME is not considered fatal. In fact, it still isn't considered much more than a syndrome of strange symptoms in 2012! Yet it is has made far more suffer for years than patients with multiple sclerosis or lupus according to our own CDC. Careful review of the science has proven, however, that is is not just a syndrome and those who tried to make a difference years before should be remembered because, as Guy de Maupassant said, "It gives back life to those who no longer exist".

As I read, again, the names on the ever-expanding Memorial List, I remembered one woman who organized a medical conference in Florida not long after I had been diagnosed and years before there was a national or international professional group to do this. Marilyn J. Stewart had speakers from around the world including the first researcher who had discovered a retrovirus linked to CFIDS/ME, Dr. Elaine DeFreitas. (The retrovirus, as it turned out with replication funded by the NCF, only was in 2% and not causal.) Marilyn was an early volunteer for the NCF and even developed a calendar to raise awareness and help fund research. She died of what CFIDS/ME led to: cancer. She was only in her early sixties. Marilyn designed the donation cards that the NCF sends out to notify those who have had a donation made in a loved one's name or to honor someone.

I knew Donald Bradford Sanford personally. He was just 60 when he died after having massive seizures and being rushed to the ER where his heart stopped. Don was a lover of nature and took wonderful photographs. He led a support group in Wrentham, Massachusetts that met at the church where his funeral was held. Not yet 60, Andrew Palese died of CFIDS/ME and, in his will, left a large amount to the NCF to help fund research. Originally, he was from New York. Just 52, Dr. Jonna Lee Lannert sought the help of Dr. Jack Kavorkian to end her suffering after she had worsened so much after taking Ampligen, the drug so many patients want to have approved by the FDA that don't know the real history of the drug. She had published in medical journals and loved life dearly until CFIDS/ME caused her to be bedbound.

One of the NCF's research funds is named to honor Diane M. Comeau who died when she was only 49 of a raging infection her body couldn't fight that turned septic. Now we've learned that isn't as unusual with this disease as we once thought. Another fund is named after Karen Lynn Walker who was only 46 when she died. Karen was an artist who "fought for disability, for treatment." A highly placed NASA employee, Marie Vale went to our NIH to find out why she was sick. They never gave her a diagnosis yet, four years later, she got a copy of her records and they indicated she had "Chronic Epstein-Barr Virus" that is now known as "CFS". She told a close friend just days before she died of leukemia, the result of CFIDS/ME at age 47, that the illness was being covered up from "very high up".

Jackie Veske had a support group in Illinois and volunteered for her state group. She was only 39 when she died of heart problems. Many of us have heard of Lynn Gilderdale from the UK who was helped to take her own life when in her early 30's. Lynn had been sick since she was 14 and was bedbound, unable to drink or eat by herself and in "horrific pain". One of the youngest on the Memorial List is JR Weber who was just 18 when he died of cancer at his home in Oregon. His mother, also a patient, was a support group leader. JR was diagnosed when he was 7 years old which was when child services tried to remove him from home for not attending school. He was home schooled and was preparing to take his GED when he died of "acute myolytic leukemia as a result of chemo regimen during Burkitt's Lymphoma at age 15". He was already suffering so from CFIDS/ME that he didn't want the chemotherapy but was threatened, once again, by the treating facility.

If you're newly diagnosed or have had CFIDS/ME for just a few years, take a long look at the Memorial List of those who suffered long before you were aware that this disease existed. Know that there were hundreds and thousands who tried to make a difference. Then make your plans to help spread awareness for this coming Awareness Day on May 12th. You can ask the NCF for booklets to distribute to local public school nurses. You can make posters from the centerfold or give your library an assortment of brochures to have on hand for distribution. You can make a donation to help research or go shopping online via the iGive mall where you can designate the NCF to receive a percentage of whatever you spend. Or you can make a dozen other plans to further CFIDS/ME awareness. Join me in making a difference and making sure none of those on the Memorial List died in vain. We're all vulnerable but there's no reason for not doing something. Do what you can because it's the right thing to do.