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By Gail Kansky

Winter 2013-2014

As Schopenhaueronce said, “All truth goes through three stages: first, it is ridiculed; next, it is violently attacked; finally, it is held to be self-evident.” We’ve seen scientific proof ignored instead of ridiculed. We’ve seen scientific fact ignored instead of being attacked. And history has proven repeatedly that it takes decades for any new scientific proof to be accepted as fact.

In the 1950’s, there was a brilliant physician from England who noticed a huge rise in childhood cancers. Carefully looking into every aspect, Dr. Alice Stewart found it was happening, primarily, to affluent families. She sent out questionnaires to the parents of these children and found that childhood cancer was developing as a result of prenatal x-rays. Her paper was published in The Lancet yet this shocking news was ignored by the medical establishment in the UK as well as in the US. Finally, in the 1970’s, X-rays, that are known to give off radiation, were banned for prenatal women.

The VFW Magazine reported that physicians have found Gulf War Illness in soldiers that were not in the Gulf War but had fought in Iraq and Afghanistan. This malady that has ruined lives and seen soldier’s families begin to physically suffer in the same way after the soldier returned home, was renamed when our government and the Veteran’s Administration paid the Institute of Medicine (IOM) to rename GWI, in early 2013, as “chronic multisymptom illness” (CMI). The new name could be broadly applied to many illnesses, both mental and physical. Those that were formally diagnosed with chronic fatigue syndrome, fibromyalgia and functional gastrointestinal disorders that fought in Iraq will now qualify for VA compensation but only if they are rediagnosed with CMI! What a way to downgrade an illness via “redefining” it and making it as broad as possible! And what a way to never discover the proven source along with a real therapy.

The CMI panel hopes to come up with a definition soon for GWI yet for decades our veterans have not been treated correctly and, instead, have been medically ignored and even abused. What that VA magazine did not state was that the IOM defined GWI so broadly that they suggested the best remedies to be CBT, GET and antidepressants! Does that sound familiar? Two of the IOM “experts” that did such a shameful and harmful thing to our war veterans were the IACFS’s president, psychologist Fred Freidbergand the CAA’s scientific advisor, who worked at the CDC for years, Suzanne Vernon. They, along with others from the IOM committee, ignored both government work and all proven scientific fact about GWS.

Now it’s our turn. Thus far, it has not been difficult to find CFIDS/ME patients who have a very similar illness as Gulf War Illness. We refuse to call GWI “CMI” just as we have refused to call those with CFIDS/ME by the trivializing “CFS” name given to it by our CDC. In 2012, the CFSAC recommended that our government convene a workshop to “reach a consensus for a case definition” for this illness. Yes, the same CFSAC that the National CFIDS Foundation refused to join when asked by the HHS well over a decade ago. We felt then, as we do today, that the committee would remain useless and would be allowed to accomplish nothing positive. On September 23rd, to nearly everyone’s surprise, the DHHS was “pleased to announce that the Institute of Medicine will begin conducting a study on the Diagnostic Criteria for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome…” Since our own CDC removed ME from their diagnostic list which, as a result, would no longer would allow physicians to diagnose ME, why does our government now refer to CFIDS as CFS/ME? Most likely, it’s merely another ploy to placate the patient community and make them feel our government really cares. The DHHS “has also agreed that the IOM Committee will include approximately 15 members with expertise in the following areas: epidemiology, clinical medicine/primary care and other health care fields, particularly with expertise in the following areas: neurology, rheumatology, immunology, pain, infectious disease, behavioral health, cardiology, endocrinology…” Notice that they never mentioned any with expertise in radiology or in any area that will have the least clue of the science already proven, including oncology, a link that our very own government has proven? They will probably ignore all the immune dysfunction that was proven decades ago. The DHHS is over the NIH and part of the NIH is the National Cancer Institute that published, in 2012, about a “subset” of those with “CFS” who are at risk of developing cancer. That “subset” is comprised of patients that have immune dysfunction as part of their illness and is exactly what our own medical committee and medical director have been telling us for many years: CFIDS is a slow progression toward cancer and the “fatigue” is cancer-related. All of the research that the NCF has funded to date is carefully not mentioned by our government nor will it be, we’re sure, by the contracted IOM committee.

Another who refuses to admit the truth is the IACFS. They demonstrated that with their primer that does not even tell a patient how to have surgery without harming themselves despite the anesthesia protocol being fully replicated scientific fact. Their emphasis is now on plain “fatigue”. And, of course, the government was asked to accept one good criteria by the CFSAC and not to do a “diagnostic study” as that had already been done years before with the Canadian Consensus Criteria (CCC) although we doubt the authors of that will be willing to update it since many of those authors don’t seem to admit any knowledge of the newest scientific discoveries made since the 2003 publication of the CCC.

That same day as the surprise announcement was made about the IOM contract being awarded, “An Open Letter to the “Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services” was put online to “strongly urge” using the 2003 Canadian Consensus Criteria as the case definition for this disease. There were 36 signers including many well known clinicians from the US along with others from Sweden, Australia, New Zealand and the UK. If it was such a surprise that our government had already awarded a huge amount of money (close to one million dollars) to the IOM to do this, how could a letter be prepared and signed by so many specialists and come out the same day? Many of the signers of the open letter are prior members of the federal CFSAC that did little or nothing to change either the name or the definition at the time of their individual membership. In fact, one former Chairman of the CFSAC, David S. Bell, M.D., refused to hear a report that would allow a name change with subsets for definition prepared by a workshop of that committee that was led by Leonard A. Jason, Ph.D., yet both were signers of the “Open Letter”. A small segment of a prior CFSAC meeting is now online showing the committee’s discussion of adopting the CCC as a definition and how three members of that committee had actually been intimidated ( by Dr. Nancy Lee, who represents the DHHS and two were brave enough and angry enough to admit that publicly!

The CFIDS Association of America (CAA) was “proud” to announce the DHHS’ contract with the IOM and they quietly urged many signers of the physician’s opposition letter to withdraw their position for the adoption of the CCC. Many patients were horrified that the CAA would side with this contract yet the CAA has always sided with our government as well as accepting large funding from them. Do any patients remember when the CAA refused to endorse an Awareness Day that was promoted by the late and great Tom Hennessy? To this day, there is no government-recognized day for this illness. Do any question why? The NCF did request a National awareness day years ago but we were turned down by a presidential aide that believed we were actually asking for a national day about feeling tired! Do any remember when the CAA called International Awareness Day, instead, “Lobby Day”? They still do! Do any remember when the CAA formed a committee to address changing the name of “CFS” yet never asked Tom Hennessy, the very first fiercely vocal advocate to ask for a name change, to join that committee despite his heartfelt crusade against the trivializing name given to this illness by our CDC? Do any remember when the CAA, years later, worked to “brand the name of CFS”? Do any remember, years before that action, when the CAA contacted the lead clinicians and researchers named in the historical novel, Osler’s Web, and urged them to not give any interviews and to never mention the acclaimed author of that novel, Hillary Johnson, by name? Did any expect the CAA to act any differently in 2013 than they have since a few years after they came into existence? When some signers of that “open letter” from physicians were badgered by the CAA, only one changed her vote: Dr. Lucinda Bateman. Shame on her! To reward her, the CAA recommended her to be on the IOM comittee. Is the DHHS coming to the rescue of the CDC because no other country, to date, has adopted the “empiric” (Reeves, 2005) definition that tried to make CFS into a mental disorder? Contracting with the IOM seems just another way to do this.

Both the CAA and another group that has only pretended to help patients, PANDORA, have eagerly submitted names to be on the new IOM committee to aid in this evil venture even as it became known that Dr. Kenneth Shine, the current chair of the Chronic Multi-Illness Symptom IOM panel admitted that he couldn’t recall when the IOM had been paid to develop a definition for any illness! Weeks later, 16 more clinicians signed a further amended letter to Kathleen Sebelius and others, including the NCF, signed a letter from advocates, both objecting to the million dollar contract given secretly to the IOM. The only other time that our DHHS, via their NIH, spent $1 million on “CFS” that we know of was to fund work by Yoshitsugi Hokama, PhD, that resulted in a biomarker for all autoimmune diseases including “CFS”. However, being a federal advisor to all our government agencies, Dr. Hokama knew enough not to apply for funding under “CFS” but applied under “toxicology”. Of course, just as the work on fatigue-related cancer by the federal National Cancer Institute has been kept quiet, this discovery is largely unknown except to members of our own charity. None have seen the IACFS mention this nor PANDORA or the CAA. We’re wondering if our government pressured the American Psychiatric Association to put this disease under somatic (i.e. “all in the head”) illnesses in their latest diagnostic manual?

The IOM published Gulf War and Health this year and, on page 22 they state, “Chronic unexplained symptoms are common in civilians” and they continue ignore all the science when they state, “Such syndromes are irritable bowel syndrome, chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis) and fibromyalgia…” ( The patient community online was furious as well they should be. As the complaints grew louder, an explanation of “FAQs” regarding the IOM contract appeared on the internet that was supposedly written by the federal CFSAC. The only other one that seemed to know the exact instant these “FAQs” came online, however, was the CAA, who linked to it rapidly and stated that it came from CFSAC. If that really was the source, the real question that should be asked is, “Did these FAQs come from the voting members of the CFSAC or did they come from the nonvoting members who represent different governmental agencies?” It seemed obvious that the CFSAC had not approved nor had they written nor even endorsed these FAQs. One blogger listed many of the problems with the government’s no-bid contract arrangements as well as many of the vague problems given as “FAQs”: Jeanette Burmeister, Attorney, in her blog entitled “Amped up: Ready to go”. She asked for an investigation by the DHHS’s Office of Inspector General as well as listing why the IOM has a direct conflict of interest that should disqualify them. Perhaps she heard the NCF’s board applauding her letter concerning this topic but we aren’t optimistic that it will change our government’s direction which has continuously ignored all science that has proven CFIDS/ME to be a serious disorder.

As Abraham Lincoln once said, “You can fool all the people some of the time, and some of the people all the time, but you cannot fool all the people all the time.” We don’t expect anything good from the efforts of the CFSAC or the CAA or from PANDORA or even from the IACFS and we certainly don’t expect anything good from the IOM. We’ve never gotten any good treatment from our own DHHS since they tried their best to trivialize this illness by putting it under “Women’s Health”, knowing full well that every autoimmune disease affects more women than men. Of course, no other autoimmune disease is represented under “Women’s Health.” However, we refuse to stop funding science to expose the actual cause and treatment of CFIDS/ME. We’re much too close and much too sick to stop. Perhaps that’s the very reason why our government has felt the need to push faster and harder to try and make this disease as insignificant as possible just as they’ve done with GWI. But that won’t stop us from continuing to expose the truth and funding the science to prove that truth.

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