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

Sources:
ME/CFS
ProHealth
Phoenix Rising
Thoughts about me
Guardian Liberty Voice
Avaaz.org

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: https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20final%2010-25-13.pdf

    Thanks Penny!

    Reply
  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…..

    Reply
  3. 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!

    Reply
  4. 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 @ http://www.immed.org (+ 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

    Reply
  5. 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.

    Reply
  6. blackfeathergirl   February 9, 2014 at 10:34 am

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

    Reply
  7. 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.

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

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

    Reply
  9. 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!

    Reply
  10. Dave   February 9, 2014 at 8:38 am

    Thankyou for fighting fo ME which will hopefully end the medical Apartheid used against ME patients .

    02/06/2014 Petitioning The Guardian of Karina Hansen

    We ask you to allow Karina Hansen to have the right to a second opinion from a leading ME expert

    A year has gone by and Karina Hansen, a young Danish woman with severe ME, is still confined in a mental ward, where her condition is deteriorating.

    /www.change.org/petitions/the-guardian-of-karina-hansen-we-ask-you-to-allow-karina-hansen-to-have-the-right-to-a-second-opinion-from-a-leading-me-expert-dr-nigel-speight#share

    Apartheid – Wikipedia, the free encyclopedia

    en.wikipedia.org/wiki/Apartheid‎
    Apartheid was a system of racial segregation in South Africa enforced through legislation by the National Party (NP) governments, the ruling party from 1948 to 1994

    Reply
  11. Polly   February 9, 2014 at 6:48 am

    Thanks, Penny. Apparently, our grievance with the IOM contract is clear to you now as evidenced by your most recent and excellent article.

    Perhaps you might now tackle the issue of our symptomology with regards to M.E. Derision of this disease is like a disease in itself. We need help with heightened public awareness of the devastating nature of M.E.

    Reply
  12. salkeela   February 9, 2014 at 6:14 am

    A big problem for ME patients is that doctors often promote GET (graded exercise therapy) as helpful for ME (and CFS) – even suggesting that this can lead to “recovery”.

    In fact GET is harmful to ME patients who have problems with Post Exertional Malaise (PEM). Tragically many ME patients are offered exercise programmes and so they unwittingly do long term damage to their health. (See links at end)

    I count myself as very lucky to have spoken to other ME patients early in my illness – who all advised me to be careful. Thus when graded exercise was suggested to me by my doctor (who has been very sympathetic in every other way) I was able to explain the reasons that I did not want this type of “treatment”.

    Some ME patients have ended up bed bound long-term due to mistaken advice to exercise. I may have lost my job, and much of my mobility, but I am not bed bound and I thank all those wonderful online ME patients for the early advice they gave me.

    Doctors world over need to be made aware that whilst exercise my help depression, and some types of fatigue, it does NOT help ME patients and in fact does them harm.

    Thank you again Penny for writing this article.

    Links:
    Incorrect Government Information Could Be Hurting Chronic Fatigue Syndrome Patients, New Research Finds
    http://www.prohealth.com/library/showarticle.cfm?libid=18503

    Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome
    http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

    Reply
  13. Kim   February 9, 2014 at 4:59 am

    Thank you Penny in sharing with readers the struggle the ME community are having with medical authorities in accepting the CCC criteria and not coming up with another definition like in 1988 that trivialises the illness and leaves another generation without support, time and money in researching for answers to this cruelly disabling disease

    Reply
  14. carole stevens   February 9, 2014 at 1:52 am

    Thank you Penny. Yes, ME ruins lives. Ive been sick with ME for 20 years, affter a vaccine. Not in the mind at all.

    Reply
  15. carole stevens   February 9, 2014 at 1:47 am

    Thank you Penny. Yes..ME ruins lives. Ive had it for 20 yrs, after a vaccine.c

    Reply
  16. karen gormley   February 9, 2014 at 1:37 am

    Thank you for helping to balance a horribly skewed idea of what M.E. Sufferers are like.

    Reply
  17. keuninckx   February 9, 2014 at 1:24 am

    Great job!

    Eddy Keuninckx

    “The ME Global Chronicle” editorial team member

    Reply
  18. salkeela   February 9, 2014 at 12:34 am

    Thank you so much Penny, for finding out more about this shocking situation and writing an strong article spelling out the realities of what is happening.

    Reply
  19. Libby Boone   February 8, 2014 at 11:27 pm

    Thank you Penny.

    Reply
  20. Sue Sullibert   February 8, 2014 at 8:00 pm

    Penny, Thank you for writing thisvery informative article. It is absolutely ridiculous for the US government to burn money with this project when they already HAVE a consensus definition by international experts who treat this disease every day of their lives. One HAS to wonder WHY the government is doing this.

    Reply
  21. Betty   February 8, 2014 at 5:10 pm

    Thank you for telling the story from the view of those who suffer from ME and the expert physicians/researchers who are dedicated to helping them. We have had enough shell games from the government agencies that should be helping us. The IOM must be cancelled as the ME experts have requested and the money saved spent on developing treatments.

    Reply
  22. Terry   February 8, 2014 at 5:09 pm

    Thank you for writing this article! I’ve had this disease for 28 years, and for our government to sabotage efforts by subterfuge is outrageous. Too many have suffered for too long…we can’t get all those years of our lives back, but how about giving us hope for the future?

    Reply
  23. Tracey Smith   February 8, 2014 at 3:37 pm

    Thank you so much for writing this article. So many with this disease have been misinformed and mistreated by non-experts. Hoping that more find out about the history of ME and the politics behind the damaging label, CFS. We need to support implementing the CCC — Tracey Smith, 25 years w/ME

    Reply
  24. lolly mcdermott   February 8, 2014 at 3:36 pm

    Thank you Penny for exposing the truth. You are a true journalist.

    Reply
  25. Ess   February 8, 2014 at 3:26 pm

    We ARE definitely at WAR at ‘home in our own backyard’ with the Department of Health and Human Services and their constant attack in ‘back-door’ DEceitful NONsensical maneuvers /’politics’ against the ME/CFS community–i.e. HHS and all its ‘arms’ are AGAINST seriously ill ME/CFS patients. Seriously–is this for real??!!! What century and what planet are we on . . . Maybe–‘Utter Lunacy in UNcivilized Medieval Times’ ?

    YES–most UNfortunately, this IS all true 🙁 The truth of this travesty needs to be exposed with justice swiftly served . . . finally after all these years!!

    With ‘the imminent timing of SCIENTIFIC biomarkers for ME/CFS’–and the Experts and Researchers calling for adoption of the CCC — and also STOPPING of the IoM/P2P contract — HHS has met the ME/CFS Experts and Patients in OBSTRUCTION by ramming in the ABSURD IoM and P2P contract — COMpletely IGnoring the ME/CFS Experts’ call for adopting the CCC definition of ME/CFS.

    The aim of the HHS/IoM/P2P is to REdefine ME/CFS into multiplicity and complete vagueness and slot it into the ‘psycho’ section–to ‘suit their collective political and financial’ EXPECTATIONS.

    This back-door secretive IoM/P2P contract is in NO way about helping ME/CFS patients and we ALL know that . . . Soooo there is a big CHARADE to promote its worth, along with ‘a show’ of concern for patients. If THAT were ‘true’ (concern and care for patients)–the HHS would have adopted the CCC as stated by the ME/CFS Experts and Researchers and there would be NO IoM/P2P contract. $1M + would be saved and ‘no (present) HARM’ re the IoM/P2P would be done!! AND–we would not be adding another 18 months of lost life as this ‘bogus’ HHS/IoM/P2P contract BLUNDERS through. Obviously, HHS does not care about the SCIENCE of medicine–only the POLITICS.

    NON-experts in ME/CFS defining and writing the script for a new definition of a disease they are NOT knowledgeable about ?? Yes, this is also true. Ohhh–there are ‘some’ ME/CFS experts included–but NOT the majority on the committees–and the PARAMETERS given regarding the contract to REdefine are NOT inclusive of NEW SCIENTIFIC findings–i.e. REstrictive parameters. What IS allowed is documented OLD, BIASED, OUTdated, INaccurate, NON-scientific MISinformation–soooo that pretty much SCRIPTS and wraps up the END RESULT that the HHS in all its ‘arms’/forms is MANDATING.

    Patients having to beg for a voice to be heard at various meetings–giving ‘evidence’ about this disease . . . with extremely limited time slots and poor accommodation regarding the disability that ME/CFS imposes. This is a DISGRACEFUL set-up system.

    With this forthcoming ‘trumped up’ NEW psycho definition of ME/CFS (against all the SCIENCE) — the research dollars that need to be POURED into ME/CFS would effectively be DENIED. Medical tests and monetary coverage for the tests would be DENIED. Severely ill citizens DENIED, DENIED, DENIED that they even exist with the very REAL BIOlogical disease of ME/CFS.

    Sounds MORE THAN ‘ a little FISHY’ . . . doesn’t it !!! There IS an HHS PLOT here–BIG bucks, BIG business, BIG insurance–to BURY us in ME/CFS and DENY our human rights by blocking biological research–AND locking us into this HORRID life-stealing disease till death do us part, and for generations to follow.

    Our good docs are sworn to oath–‘Do No Harm.’ Politics are DICTATING otherwise !!!!

    WHO is immune to this HORRID disease of ME/CFS? We don’t know . . . we surely didn’t anticipate ME/CFS striking and destroying our lives. We need to pay CLOSE attention and fight in this war against us.

    By the way–the HHS has just completed a similar HORRIFIC ‘exercise’ to the DETRIMENT of the VETERANS regarding GWI–Gulf War Illness; these government actions AGAINST the soldiers who have served at war for their country is UNconscionable.

    Thank you for this follow-up article, Penny. There is a LOT to REVEAL in this TRUE MOST UNfortunate DEVASTATION of lives in the ME/CFS DEBACLE!!

    Reply
  26. 2bye   February 8, 2014 at 2:41 pm

    Thank you for writing this article. It’s still very early in the process. Nothing has been wasted yet. It could be cancelled anytime. Hopefully soon!

    Reply
  27. Patricia Carter   February 8, 2014 at 2:01 pm

    Thank you, Penny Swift, for your professionalism for writing this story about what M.E. patients are doing. The Petition to Stop the HHS IOM contract and accept the Canadian Consensus Definition of Myalgic Encephalomyelitis now has 5429 signatures! https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

    Reply
  28. Penny Swift   February 8, 2014 at 12:39 pm

    You have my 100% commitment on this one!

    Reply
    • leela d   February 8, 2014 at 10:42 pm

      Thank you so much, Penny.

      Reply
    • elsvh   February 9, 2014 at 5:59 am

      Thank you Penny! You did what you promised you’ld do … which is pretty unprecedented in journalism!

      Reply
    • Ali Short   February 11, 2014 at 8:00 am

      Thank you, Penny, for listening to us patients and taking us seriously! Patients worldwide are very concerned at what’s going on at the moment, and your newest article gives hope and support to us at this crucial time.

      Reply
  29. R Funk   February 8, 2014 at 12:25 pm

    Thank you, Penny, for this informative follow-up article on ME. I am extremely pleased you listened to the comments of the ME patient community after your inaccurate first article. It is encouraging to see an article from the patient’s perspective on the attempt by the HHS to give this life-destroying illness a garbage can definition. I was diagnosed with ME in 1988 and am extremely dismayed to be fighting, in 2014, the exact same battles for professional/public recognition and adequate biomedical research. The IOM contract, and the refusal to accept the recommendation of our experts, has galvanized the ME patient community like never before. There is so much more to this story, such as the secretive NIH Pathway 2 Prevention process currently underway, which needs to be brought to the attention of the public. I encourage you to continue to report on the politics behind ME and look forward to future articles.

    Reply
    • Paul Watton   February 9, 2014 at 12:27 am

      Yes Penny, you listened to the strong opinions expressed in response to your first article and have come back with a robust follow-up piece. Thankyou.

      Reply

Leave a Reply

Your email address will not be published.