Press Releases

National CFIDS Foundation's Research Finds Chromosome Damage in Patients Diagnosed with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

Press Release — February 25th 2014

The National CFIDS Foundation (NCF) has announced its latest research findings for chromosome damage in its fifteen-patient cohort. According to Gail Kansky, NCF President, "We feel that our grant funding for Dr. Henry Heng has really paid some big dividends due to the fact that our selected patient samples displayed several key chromosome abnormalities." According to Kansky, "I would like physicians and patients alike to realize that these results indicate that this disabling disease is not malingering nor is it simple fatigue. It certainly isn't "all in your head" either. In fact, chromosome damage can't be fixed by graded exercise! Our patients are very ill and they are most concerned about cancer development and rightly so."

Dr. Heng, who headed up this research, is an Associate Professor of Molecular Medicine and Genetics at Wayne State University. Heng was the principle research investigator involved in the Discovery Channel's "Conspiracy Test" documentary in 2007. Heng had tested five Gulf War veterans for chromosome damage using spectral karyotyping. He had subsequently identified chromosome damage, at much higher levels than controls, in each one of them. Interestingly, every one of those veterans had previously tested positive for urinary uranium radionuclides.

In 2010, the NCF announced its link between Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and low-level radiation exposure. According to Alan Cocchetto, NCF's Medical Director, "We had tested a group of patients for the presence of specific internal radionuclides. This research data was formally analyzed by Dr. Carmel Mothersill, Canada Research Chair in Environmental Radiobiology and Professor of Medical Physics and Applied Radiation Sciences at McMaster University. This same patient group then became the NCF's patient cohort that was subsequently tested for chromosome damage by Dr. Heng."

Using spectral karyotyping, Heng had found that 100% of the NCF's patient samples had an order of magnitude greater chromosome breakage than controls. In fact, these patients had greater breakage than those veterans tested in "Conspiracy Test." Furthermore, 53% of the NCF's cohort had been identified as having chromosome translocations, often considered to be a recognized stepping stone as part of the cancer initiation process. In addition, Heng had also identified a new type of chromosome damage that was present in the NCF's samples. Heng's research was funded by both the National CFIDS Foundation and the Nancy Taylor Foundation for Chronic Diseases.

According to the NCF, Chronic Fatigue Syndrome (CFS) is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME). Founded in 1997, the goals of the NCF are to help fund medical research to find a cause and to expedite appropriate treatments for CFIDS/ME. The NCF, an all volunteer 501(c)(3) federally approved charity, is funded solely by individual contributions. Additional information can be found on the Foundation's website at www.ncf-net.org or in The National Forum quarterly newsletter. The NCF can be reached by phone at 781-449-3535.


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National CFIDS Foundation (NCF) Announces Link between Chronic Fatigue Syndrome and Low Level Radiation Exposure

Press Release — August 20th, 2010

The National CFIDS Foundation, Inc. has issued a press release. More information along with multiple references will be in the fall edition of The National Forum due out in early October. The press release reads

The National CFIDS Foundation Inc. of Needham, MA, has announced its formal disease model for Chronic Fatigue Syndrome (CFS) also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME). According to the NCF, a subgroup of patients with CFS fit a unique disease profile based on a model for a radioactive toxin.

Since starting its formal research grant program, the NCF has provided one million dollars in grant funding to pursue its own directed research to study ciguatera toxicology; a critical immune protein known as STAT-1; and myelodysplasia as well as myeloid leukemia — all of which have been identified in the patient subgroup.

According to Alan Cocchetto, Medical Director, "Our research suggested that a relationship existed between ciguatera poisoning, STAT-1 and myelodysplasia as well as leukemia. Early evidence also suggested that some type of catalyst was potentially involved in this disease process. Because of some very unique characteristics identified during the course of our research, what emerged was the potential for low level radiation to act as the catalyst to evoke a specific response that fit the profile for our patients. We believe this to be very important since radiation not only adversely impacts STAT-1 but it has also been found to cause myelodysplasia as well as myeloid leukemia, the very things we have been studying. In addition, the bystander effects associated with low level radiation exposure cause real problems at the cellular level and this, unfortunately, translates into an increased risk for cancer."

Gail Kansky, President, stated, "The Foundation's real revelation came when our staff linked specific research on mitochondrial DNA deletions, first published by Australian scientists in 1995, to work published by scientists in Ireland in 2005. They had identified exactly the same unique mitochondria characteristics to be due to the direct effects of low level radiation exposure. This same defect had been mirrored in CFS but it hadn't been classified for ten years. Because this fits our disease model, we are pursuing additional research studies. There is no doubt in my mind that we have found several key pieces to this disease puzzle tied to our patient group." Furthermore, Kansky added, "What is especially discouraging is that the global implications here could prove to be staggering!"

The Foundation has also noted that CFS has been previously identified as a characteristic aftermath of radioecological catastrophe. A lengthier article including references will be in the fall edition of the newsletter.

Founded in 1997, the goals of the NCF are to help fund medical research to find a cause, expedite treatments and eventually a cure for CFIDS/ME. The NCF is funded solely by individual contributions. Additional information can be found on the Foundation's website at www.ncf-net.org or in The National Forum quarterly newsletter. The NCF can be reached by phone at 781-449-3535.

Additional information on this press release is available here.


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National CFIDS Foundation Adds to its Innovative Research Grant Funding for 2009

Press Release — December 11th, 2009

The National CFIDS Foundation (NCF) of Needham, MA has announced its latest research grant recipient to add to its growing list of funded projects which total $451,160 for 2009.

Vitaly Citovsky, Ph.D., Professor in the Department of Biochemistry and Cell Biology at SUNY Stony Brook, is the latest recipient of a research grant for $105,000 from the NCF. Citovsky's grant is titled "Potential synergism between cyanobacteria and Agrobacterium and its molecular basis."

According to Alan Cocchetto, NCF's Medical Director, "This research is aimed at determining if there is a synergistic relationship between two very unique bacteria. It may be possible for agrobacterium to develop a symbiotic relationship with cyanobacteria within the human microbiome, ultimately enhancing the cyanobacteria's pathogenicity and to aggravate the medical condition of the host. This is important since agrobacterium is known to genetically transform human cells. Furthermore, this research will complement the toxicology work currently underway by Harry Davis, Ph.D. and his team at the University of Hawaii on ciguatera and cyanobacteria and how they relate to CFIDS/ME."

Gail Kansky, NCF's President stated "2009 has been a terrific year for the Foundation. Through the hard work of dedicated volunteers along with generous donations from patients and benefactors, we have been able to provide directed funding to some truly outstanding researchers worldwide in an effort to conquer this disease. 2009 represents our largest funding year ever since the Foundation first began its formal research grant program in 2002. We have made tremendous strides in our knowledge of this disease. These grants reflect our efforts to build upon our previous research in a step-by-step fashion to connect all the scientific and medical dots relating to CFIDS/ME. The NCF represents what a true charity should be as there are no paid employees and our donations go to fund innovative research projects. We look forward to 2010 because the results of this research should provide much hope to millions of patients around the globe.

Founded in 1997, the goals of the NCF are to help fund medical research to find a cause, expedite treatments and eventually a cure for CFIDS/ME. The NCF is funded solely by individual contributions. Additional information can be found on our website at www.ncf-net.org and in The National Forum quarterly newsletter. The NCF can be reached by phone at 781-449-3535.


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National CFIDS Foundation Funds New Cutting-Edge Research

Press Release — August 2009

The National CFIDS Foundation (NCF) of Needham, MA has funded additional cutting-edge CFIDS research to add to its list of current grants totalling $346,160 for 2009. A team, from the University of Hawaii at Manoa, is the latest recipient of a research award from the NCF. The $91,160 grant is aimed at screening patient samples for a cyanobacterial toxin known as BMAA as well as to study the effects of various toxins onmitochondria and other cells. The principal investigator is Harry Davis, Ph.D., Professor of biochemistry at the John A. Burns School of Medicine whose expertise is in the area of mitochondrial metabolism. The co-investigators include Yoshitsugi Hokama, Ph.D., Professor Emeritus of pathology and toxicology, and Ken Yabusaki, Ph.D., biochemistry researcher. They will be assisted by Cara Empey-Campora, Ph.D., cellular and molecular biologist. The title of this grant is "Chronic Fatigue Syndrome: Screening for Beta-N-methylamino-L-alanine (BMAA) in CFS Serum Samples and the Effects of Toxins, Lipid Substances, and Antibodies to Phospholipids on Mitochondria and Neuroblastoma Cells." In addition, the University of Hawaii group has teamed up with Paul Cox, Ph.D., Director of the Institute for Ethnomedicine in Jackson Hole, WY and Sandra Banack, Ph.D., also with the Institute for Ethnomedicine. Both Cox and Banack are considered to be leading experts in cyanobacteria and BMAA.

According to the National CFIDS Foundation's President, Gail Kansky, "This work is of critical importance to our research efforts regarding CFIDS. Since our previous research had established a link between ciguatera poisoning and CFIDS, it seemed only logical to pursue an investigation into cyanobacteria since there exists a scientific link between this type of bacteria and ciguatera. BMAA is one of several toxins that are produced by cyanobacteria. Futhermore, since cyanobacteria have been found in the ocean, lakes and ponds, the fallout could be enormous."

Alan Cocchetto, Medical Director for the NCF stated "Cyanobacteria are suspected in the development of a neurological disease called Amyotrophic Lateral Sclerosis/Parkinsonism-Dementia Complex which has symptoms of ALS, Parkinson's or Alzheimer's Disease. Since cyanobacteria are considered to be photosynthesizing bacteria, this is particularly intriguing since our research has yielded certain markers that do indicate the possible involvement of toxic photosynthesizing bacteria in CFIDS. By looking for BMAA in patient blood samples while pursuing the identification of other toxins and by examining their effects on mitochondria, the energy production power plants in the human body, we will be able to answer key questions that we believe pertain directly to not only the disease process but could provide important clues regarding the etiology of CFIDS."

Several months ago, the NCF awarded research grants to Tsvee Lapidot, Ph.D., Professor of immunology at the Weizmann Institute of Science in Israel and to Hany El-Shemy, Ph.D., Professor of biochemistry at Cairo University in Egypt. These recipients received $255,000.

Founded in 1997, the goals of the Foundation are to help fund medical research to find a cause, expedite treatments and eventually a cure for this devastating disease. The Foundation is funded solely by individual contributions and has no paid employees. Additional information can be found on our website at www.ncf-net.org and in The National Forum quarterly newsletter.


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Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy

Needham, MA May 31st, 2006

Recent independent scientific research funded by the National CFIDS Foundation, Inc. (NCF) of Needham, MA provided preliminary confirmation of a new virus identified in patients with Chronic Fatigue Syndrome. The Foundation's medical research dovetails with that completed to date by Cryptic Afflictions, LLC *, a private company.

Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.

According to the company, “This previously undetected virus appears to be of significant importance to researchers looking for a cure to Multiple Sclerosis and many other neurological illnesses. Antibodies to the newly discovered virus were found in the cerebrospinal fluid and blood of over 90% of the patients tested with Multiple Sclerosis. It is believed that this newly discovered virus may prove to be responsible for a host of neurological disorders. Tests are currently being prepared for tissue samples of lesions within the brains of patients with Multiple Sclerosis. This will be the final round of tests before approaching the FDA for approval of the diagnostic tests.”

Dr. Robbins’ evidence includes the presence of virus-specific antibodies in the serum and cerebrospinal fluid of patients suffering from these disorders, the ability of the virus to cause virtually identical disease in experimentally-infected animals, and nucleotide sequence data that indicates that the virus is pandemic and represents a single virus species much like measles.

A recently published medical journal article suggests that Cryptovirus is most similiar to Parainfluenza Virus-5, a rubulavirus in the paramyxovirus family. Another rubulavirus related to Cryptovirus and Parainfluenza Virus-5, that has gained national attention for its large outbreak, is the mumps virus. Rubulavirus infections have been associated with encephalitis, meningitis, orchitis, inflammation of the testicles or ovaries, spontaneous abortion, and deafness.

The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity.

Without this protein, patients are unable to effectively fight viral and bacterial infections. Thus, the next logical question to be answered was ‘Could a virus be causing this Stat-1 depletion?’ Cocchetto continued, “Parainfluenza Virus-5 is a virus that had to be seriously considered as a possible piece of this medical puzzle because it directly targets and destroys the Stat-1 protein.” Gail Kansky, President of the NCF stated, “Once we determined the status of Stat-1 in patient blood samples, we knew that we had to look for possible evidence of Parainfluenza Virus-5 infection. It was during this phase of our own research that we actually learned of Dr. Steven Robbins’ discovery of Cryptovirus specific antibody reactivity in patients with CFS.”
Dr. Robbins had tested fifty-six serum specimens from patients who had been diagnosed with CFS along with eleven matching cerebrospinal fluid samples obtained from physicians in Brisbane and Southeast Queensland.

Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.

The National CFIDS Foundation’s own research began to dovetail with that of Dr. Robbins. Scientists funded by the Foundation performed numerous tests for Parainfluenza Virus-5 that included antibody as well as PCR specific probes. Antibody testing provided some initial hints, however a PCR specific probe picked up the infection in a former patient of David S. Bell, M.D. and Paul R. Cheney, Ph.D., M.D., both considered well known specialists in the field of Chronic Fatigue Syndrome. Kansky commented, “Though our funded research continues in diagnostic testing, our findings have served to highlight the important work of Dr. Robbins and the role of Cryptovirus and Parainfluenza Virus-5 infection in CFS.”

NCF scientists utilized the NIH Genbank database to find the nucleotide sequence for a specific viral protein of Cryptovirus that matched 100% to the porcine (swine) strain of Parainfluenza Virus-5 known as the SER strain. In 1994, scientists at Bayer AG in Germany first isolated the SER strain from swine with Porcine Reproductive and Respiratory Syndrome.
“This may represent a zoonotic process since zoonotic viruses are those that can be transmitted between animals and people” stated Cocchetto. Kansky commented, “Here we have what appears to be the same viral strain of Parainfluenza Virus-5 on two continents and in two different populations, swine and humans. Given that the NCF found Parainfluenza Virus-5 in one CFS patient in the United States certainly raises the bar.” The Foundation is currently funding further research.

The National Institutes of Health (NIH) has several ongoing grants in the Parainfluenza Virus-5 field. Currently, however, there is only one U.S. scientist specifically funded for research on the SER strain of Parainfluenza Virus-5 by the NIH.

Founded in 1997, the National CFIDS Foundation has grown to become the largest, all-volunteer patient organization of its type in the United States. The Foundation has no paid employees and is funded solely by individual donations for the primary purpose to fund medical research into the cause and treatment and/or cure of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS).

*  “Limina Biotechnologies, Inc. is a recently formed subsidiary of Global Medical Technologies, Inc. that was established for the purpose of merging Cryptic Afflictions LLC and Global Medical Technologies, Inc. It is the intent of management to spin off this newly formed corporation once the merger is completed so Limina can raise capital through its own IPO,” according to the company's website, www.globalmedicaltech.com.

For more information on these findings click here.


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Neurotoxin Discovered in Chronic Fatigue Syndrome

Needham, MA November 17th, 2002

Research sponsored by the National CFIDS Foundation was formally announced at the International Symposium on Toxins and Natural Products in Okinawa, Japan on November 17-19, 2002 by Dr. Yoshitsugi Hokama. The research, for the first time, discovered ciguatoxin, a potent neurotoxin, in the blood of Chronic Fatigue Syndrome patients.

“Chronic ciguatera poisoning has already been suggested as a scientific model for Chronic Fatigue Syndrome (CFS),” stated Dr. Hokama. Ciguatoxins are potent, heat stabile, non-protein, lipophilic sodium channel activator toxins and are recognized as some of the most potent biological toxins known. They produce dramatic neurological manifestations, such as peripheral sensory or motor symptoms (including paresthesias, pain, burning, tingling, numbness), central symptoms such as headache, autonomic dysfunction and also affect multiple body systems (gastrointestinal, immune, hepatic, cardiovascular) and the muscles.

Many CFS patients in the study had higher levels of the toxin than the patients with cancer, hepatitis or acute ciguatera poisoning.

Quantitative assay results range from 1:5, the lowest toxin level, to 1:160, the highest toxin level. All CFS samples gave titres of at least 1:20, with the majority of titres from 1:40 to 1:160.

Dr. Hokama presented his preliminary findings in a lecture titled ‘Acute phase lipids in sera of various diseases: Chronic Fatigue Syndrome, ciguatera, hepatitis, and various cancer with antigentic epitope resembling ciguatoxin as determined with Mab-CTX.’

Dr. Hokama is a Professor in the Department of Pathology at the John A. Burns School of Medicine at the University of Hawaii at Manoa. He is a world expert in the area of fish toxins with hundreds of peer reviewed publications to his credit. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin (Mab-CTX). His current research into Chronic Fatigue Syndrome and a ciguatera toxin connection was funded by the National CFIDS Foundation’s research grant program.

Gail Kansky, President of the National CFIDS Foundation, said, “We believe this to be a significant breakthrough. CFS, which has come to include myalgic encephalomyelitis, is a very severe illness that has not received adequate funding or appropriate medical attention. Although there are still many unanswered questions and much work to be done, research efforts will ultimately turn the tide in the understanding of this disease and allow patients to receive appropriate medical therapies. We are indebted to Dr. Hokama and his colleagues for providing this monumental first step.”

For more information on this study or Chronic Fatigue Syndrome, please contact The National CFIDS Foundation.

Contact Information:
Gail Kansky 781-449-3535

For more information on Ciguatera Toxicology click here.

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