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By Gail Kansky

Spring 2014

With all that’s happening with our government (NIH) giving a nearly $1 million contract to the Institute of Medicine (IOM) for them to form a committee to “define”, in our government’s own words, a “Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, why didn’t the National CFIDS Foundation (NCF) have a speaker to talk at their January meeting? Because we’d rather spend our limited amount of energy exposing the truth via science to find a therapy to help all patients. That’s something we can’t accomplish trying to grab the limelight via advocacy. It’s actually the same reason we’ve had since we began. We refused a spot on the government’s advisory committee, the CFSAC, because we thought that no good recommendation from them would ever be acted upon and, sadly, that’s been true to date. Instead, we want to help the patient community by finding and printing the truth and funding scientific research that can help the world’s patient community. We’re adamant about that since patients make up over 99% of the NCF. To do that, we have to face facts.

The United States Department of Veteran’s Affairs states, “The Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses was created by Congress in 1998, and first appointed by Secretary of Veterans Affairs Anthony J. Principi in January, 2002. The mission of the Committee is to make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War. According to its charter, the guiding principle for the work of the Committee shall be the premise that the fundamental goal of Gulf War-related government research is to improve the health of ill Gulf War veterans. Research priorities will be judged against this standard.”

Less than a year ago, that committee was purged for recognizing scientific fact and being truthful! Why? One former member said it was due to being too truthful! Over one-half of the committee was chagrined to find out the government bureaucrats and government researchers seemed to want a biased psychological view of GWI instead of a scientific one. The new RAC is staffed by only VA people and the new committee would no longer be able to “access the overall effectiveness of government research on the nature, causes and treatments.”

In another blow to GWI veterans, the independent Institute of Medicine renamed GWI with the far broader and trivializing name of chronic multisymptom illness to ensure that science would not be triumphant. Members of that IOM committee who struck such a shameful blow to our veterans included the president of the International Association of Chronic Fatigue Syndrome (IACFS), psychologist Fred Friedburg, and the CFIDS Association of America’s (CAA) scientific director, Suzanne Vernon. Were they chosen because they already knew what the cause of GWI was?

What does GWI and CFIDS/ME have in common? Well, not as much scientific research has been done on the estimated 30% of affected veterans who served in Operation Desert Storm and got GWI that was actually made public, but a new study published in Plos One last June furthered science when researchers found they did not suffer from “combat fatigue” and “stress”, as our government claims. Instead, researchers at Georgetown University proved their “condition that presents with symptoms such as cognitive impairment, autonomic dysfunction, debilitating fatigue and chronic widespread pain that implicate the central nervous system. A hallmark complaint of subjects with Gulf War Illness is post-exertional malaise; defined as an exacerbation of symptoms following physical and/or mental effort.” That study, along with many others, was far too much proof that GWI was a neurological condition with the same or all too similar symptoms that have been found in CFIDS/ME.

Our government has been using the term of “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” or “ME/CFS” recently, it seems apparent, as a way to placate the patient community despite the CDC taking ME off this country’s diagnostic code well over a decade ago. In a “Tool Kit” that the CDC continues to offer to physicians online, they have carefully stated that “CFS” is not to be confused with ME as they recommend “Cognitive behavioral therapy, or CBT” and “Graded Exercise Therapy (GET)” which are no help and the latter can make patients worsen! If our own government has no diagnostic code for ME, how can they pay the IOM to create a “diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome”? Or, with the current information in this newsletter, the question may well be, “How long have they hidden the knowledge of a diagnostic entity?” or even treatment?

Will the IOM, who claim they will “conduct a study to identify the evidence for various diagnostic clinical criteria” in order to “disseminate the criteria nationwide to health professionals” include the fully replicated science that has already become fact? Will physicians be told that CFS has already been proven to be an autoimmune disease by one our government’s own “federal expert consultant”? Will they know that a part of the immune system (Stat-1) slowly decimates in “CFS”? Will they be reminded that our country’s own federal division of the National Cancer Institute has scientifically proven that a subset of patients that have CFS have a “subsequent risk of cancer”? Who’s in the subset? Every patient with immune dysfunction. That’s what the “ID” in CFIDS stands for! How many things can possibly cause the severe “elevated genome instability” just shown by Dr. Henry Heng in “CFS”? Will they know about that work and, if they know, will they continue to ignore the truth? Will anyone on that committee know about the recent NCF press release sent out by PR Newswire that was tracked and found to be viewed by 2,000 media and online viewers telling them of the dramatic damage found in our scientific cohort tested?

Dr. Nancy C. Lee is the Deputy Assistant Director of Health and Director of the Office of Women’s Health as well as the Designated Federal Officer of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). Our government put “CFS” under the Office of Women’s Health years ago as another way to treat this as an insignificant “woman’s illness” despite it affecting men. All autoimmune diseases find higher rates in women but no other autoimmune illness is under that DHHS office. She spoke to the IOM committee even though the CFSAC did not recommend a new diagnostic criteria but suggested one that already exists be adopted. She thanked the IOM “for the opportunity to speak to you today” as she knew they were told to develop a diagnostic criteria for ME and for CFS. Does anyone doubt that she’s ignorant of the work done by Dr. Yoshitsugi Hokama when he, as only a toxicologist is capable of doing, took apart the blood of patients diagnosed with both “CFS” and “ME” from different areas of the world, molecule by molecule, and found them exactly the same? Yet Nancy Lee said, referring to ME and CFS, “These may be distinct disease entities…” Why does she purposely ignore irrefutable science done by one of her own federal consultants? The government’s silence about the science proven and fully replicated speaks volumes. They continue to take pains to obscure serious illnesses.

The IOM panel is expected to deliver their report by the end of this year. We don’t expect that it will be accurate or even close to accurate but we’ll be spending that time to reach our own goal of looking for a therapy since others have proved the cause of CFIDS/ME beyond a doubt and we have made sure our own “cohort” was tested by the same laboratory that does all radiation testing for our own government. The government has demonstrated, again and again, with both GWI and “CFS”, they don’t want what we want but, with your help, we’ll get there. If your name is listed on this issue’s Donation page, you’ve helped and we’re all very grateful to you. If it isn’t, please add your name via your own donation for our next edition of this newsletter and help make the next issue closer to our final edition because we’ve reached our goal. As Winston Churchill once said, “Never, never, never give up" and, we might add, “especially when we’re so, so close!

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606