CFS Patients War Against Controversial U.S. Health Research Plan [Video]

CFS patientsMillions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients all over the world are closing ranks in an attempt to stop the U.S. government’s initiative for a controversial health research plan that will see the Institute of Medicine (IOM) looking for ways to diagnose and redefine their illnesses. Thousands of people already affected by these diseases have signed an Avaaz petition to try to force the U.S. Department of Health & Human Services (HHS) to cancel its contract with the IOM to “develop diagnostic criteria” for ME/CFS. An attorney who was disabled by ME eight years ago (see photo above) has threatened to fight in federal court and “the court of public opinion,” and hundreds of others are preparing to wage war against the plan in any way they can.

The term ME/CFS refers to one of the most controversial “diseases” on the planet. In the United States alone, it is accepted that at least one million people currently suffer from its symptoms. There is no known cure and there is still a body of study that labels the condition psychological, if not psychiatric. There is also dispute about whether ME and CFS are the same condition, or whether they should be diagnosed as separate illnesses. The people suffering from this disease, however, have a different argument.

Patricia Carter, a former lawyer who has had ME for 27 years, and who says her life has been “destroyed” by it, originated the petition to cancel the contract between the HHS and IOM. Carter is also administrator of an internet forum, mecfsforums, for people suffering with ME and CFS, which currently has more than 6,850 members. What she and the forum’s members want is for the HHS to adopt a set of criteria already used in Canada, called the Canadian Consensus Criteria (CCC), as both the “research and clinical case definition” for ME and CFS.

“For decades, sufferers have been left with no real biomedical research and no effective treatments,” Carter told Guardian Liberty Voice. “Now the HHS is attempting to prolong this time by contracting with the IOM to redefine the illness.” She, like thousands of other MS and CFS patients, believe the research by the CCC should take precedence and be used.

IOM Open Meeting

When the IOM announced its first committee meeting held in late January, they invited public comments, but only from about 15 people. Of course, it did not take long for these spots to fill up, but one of the people who managed to get in was Jeannette Burmeister, an attorney who has been disabled with ME/CFS for eight years.

Burmeister worked with her husband Edward Burmeister in one of the world’s largest law firms until she became ill. She is one of several key ME/CFS patients who has pledged to wage war against the U.S. government’s controversial health research plan.

She maintains that the HHS “hijacked” a recommendation put forth by 50 international experts. (See Call for Adoption of the Canadian Consensus Criteria (CCC) below.) Instead, they did a crazy thing and decided to create a committee of “non-experts.” Instead of using an “excellent case definition” that already exists with the CCC,  the HHS hired an institution that does not have experience or authority to do the job, Burmeister said. Further, the IOM has a “fatal organizational conflict of interest,” and she reveals that she has already filed an official complaint because of this.

Burmeister told the IOM meeting that the HHS had “broken federal law” in terms of Freedom of Information Act (FOIA) compliance, and says she has filed a lawsuit against the department and the NIH in a U.S. district court. The HHS had also issued “misleading statements” relating to the nature and terms of the contract and its parties. Finally, Burmeister said, “hundreds of thousands of patients’ lives were ruined or ended by a federal consensus definition in 1994.” This had resulted in patients who were “furious and alienated” by “state-sponsored bullying.”

While scientists were coming to grips with the causes of ME and CFS, Burmeister says, the NIH and CDC were looking at “fairy dust” and venturing into Ripley’s Believe It Or Not! territory alongside studies that discuss the earth being flat and “the sun revolving around the earth.” Urging the government bodies to abandon the project, she said she and her husband would “not hesitate to bring additional lawsuits.” With the support of thousands of ME and CFS patients who were “ready to fight you at every step,” they would wage the battle “in federal court and in the court of public opinion.”

Call for Adoption of the Canadian Consensus Criteria (CCC)

On September 23, 2013 an open letter (now referred to as the “experts’ letter”), signed by about 50 U.S. and international clinicians and biomedical researchers with substantial expertise in ME/CFS, was sent to Kathleen Sebelius, the secretary of HHS, stating that they had “reached a consensus” that the CCC should be adopted in the United States. The letter pointed out that CCC incorporates “extensive scientific knowledge” that has been gleaned from many years of research. It has also been endorsed by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME), the leading professional organization dealing with research in both ME/CFS and international patient care.

The letter also stated that the “expert biomedical community” would continue to update and refine the CCC case definition as more scientific knowledge becomes available. Even though updates and refinements would be necessary, the signatories agreed that failure to adopt the CCC as the “sole case definition for ME/CFS” would “significantly impede research and harm patient care.”

Efforts to “reach out to” groups like the IOM was a waste of taxpayers’ money, the ME/CFS experts said, because these groups do not have “the needed expertise” to define and develop “clinical diagnostic criteria” for the disease. It would be far more preferable to use the money on funding research to learn more about the crippling disease. By “engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable” would take ME/CFS science backwards.

Finally, the experts’ letter warned the U.S. government that patients suffering from ME/CFS, many of whom have been “disabled for decades,” needed to see things moving forward: “There is no time to waste.” To ensure that time is not wasted, patients suffering from ME/CFS believe it essential to wage war against the U.S. government’s controversial health research plan, and they will do everything within their power to get the CCC adopted as soon as possible for the sake of ME/CFS patients.



By Penny Swift

Phoenix Rising
Thoughts about me
Guardian Liberty Voice

34 Responses to "CFS Patients War Against Controversial U.S. Health Research Plan [Video]"

  1. Science_Based   March 15, 2014 at 4:45 pm

    Thank you Penny, for writing this important article. As Stanford Infectious Diseases expert on M.E., Dr. Jose Montoya has said, M.E., “is arguably the greatest medical and
    scientific challenge of our time.” The thought that a bureaucratic committee – of which half of the members have never treated an M.E. patient – would read a bunch of outdated, self-referenced, incestuous psychiatric mumbojumbo articles on “CFS”, and equate that with M.E…. and then develop a case definition is beyond ludicrous. When 25% of ME patients are housebound or bedbound – not to mention unable to care for their families or work – isn’t there a sense of urgency to get to the bottom of this, and to Do It Right?

    Do you take your Lamborghini to a Lada dealer for service? Of course not. So why bring one of the most complex diseases (or group of diseases) to a bunch of bureaucrats for understanding, rather than allow the world’s experts on the disease to develop a case definition?

    Fortunately, patients are not only fighting back, they are collaborating with biomedical experts on this disease around the world, to fight back! See the experts’ letter here:

    Thanks Penny!

  2. Michelle   February 11, 2014 at 3:23 am

    I am at the end of my tether…. M.E. is not hypochondria… in fact I dont even bother my doctor anymore because there is nothing they seem to be able to deliver to me that would help me…. so I just manage with my own resources which are resting and pacing…..

  3. John Buettner   February 10, 2014 at 6:21 pm

    THIS is where research money would be BETTER SPENT!’s-million-dollar-appeal-for-microbiome-study.28139/

  4. Penelope   February 9, 2014 at 10:34 pm

    This is so important to the international patient community, as well as Americans. Thank you from Australia!

  5. marie moore   February 9, 2014 at 2:11 pm

    Thank you Penny, for writing your followup awesome article as you promised…..AND listening to “Us” the patients.
    I have been ill (ME/CFS) for over 40+yrs now with these biological bacterial/viral based diseases, being completely isolated,homebound w/full time caregivers and complete LOSS OF MY LIFE.
    I have seen at least a 100 docs…….who STILL KNOW NOTHING !! about these illnesses.
    What is WRONG w/ this pic ??
    Please also ref to Dr Garth Nicolson @ (+ google his talks) AND his book “Project Daylily”…..his book will give u a ‘clue’ of the politics behind the dark,deceitful genocide that is behind ME/GWS & others.

    Can u tell. ? :)….that Us Patients, are DONE w/the BS “AND WE ARE NOT GOING TO TAKE IT ANYMORE” ………….” NO HHS IOM Contract ” !!!!!!!!!
    God Bless u Penny & thank u again

  6. lokee   February 9, 2014 at 2:01 pm

    Thank you Penny! M.E. took this aerobically active, 30-something, outdoorsy entrepreneur from success to near-poverty 18 years ago. My beloved hikes in the mountains were supposed to cure “cfs”, but if I or my doctor would have known exercise could permanently cripple someone with M.E., things might have been different. I hope your writing can bring this fact to light; it is so sad to see so many young people who have to fight the same fight I and others have for 30 years.

  7. blackfeathergirl   February 9, 2014 at 10:34 am

    Thank you Penny. You did a great job with this article.

  8. John Buettner   February 9, 2014 at 10:33 am

    Penny, thank you for for bringing this ongoing travesty to light, and thank you for listening.

  9. James Hall   February 9, 2014 at 9:21 am

    Thank You Penny for listening to the ME community, we need more people like you.

  10. Kelly Connor   February 9, 2014 at 8:54 am

    I am not at war with anyone, I am a disabled person who sometimes has to fight for her life. Those who wish to paint us as head cases do everything they can to prevent us from getting testing and treatment. I submit that they are at war with us. Thank you, Penny!

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