CDC Removes Reference to Disputed ME/CFS Therapies From Website

The agency has long recommended two controversial treatments for chronic fatigue syndrome. Earlier this month, it quietly made some changes.

For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome: a program of steadily increasing activity, and a specific form of cognitive behavior therapy. In early July, the agency removed information about the two treatments from the main section about the illness on its website — a move hailed by patients and advocates who had long fought for the change.

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“It’s really, really significant,” said Mary Dimmock, a former pharmaceutical scientist and business analyst who turned to advocacy after her son became severely ill. The CDC’s recommendations influence medical treatment not only in the U.S. but around the world, noted Dimmock.

British psychiatrists and other experts developed the two therapies decades ago. According to their theory, these patients suffer from severe deconditioning and a misconception that they are medically sick; to get better they need to increase their levels of activity. An influential study called the PACE trial, the largest ever for the illness, reported from 2011 onwards that patients improved and could even recover from the two treatments.

But patients and advocates have long argued that the science is deeply flawed and that too much exertion can be harmful, as reported in an Undark investigation last fall. In particular, the PACE trial has come under intense international criticism for data manipulation and other serious methodological lapses.

About a million Americans are believed to suffer from ME/CFS. It most often appears to be triggered by a viral illness, or possibly other infections or environmental exposures. A 2015 report from the U.S. Institute of Medicine (now the National Academy of Medicine) concluded that it was a highly debilitating organic disease, not a psychiatric one. The distinguishing feature, the report found, was what it called “exertion intolerance” — in other words, patients suffer sustained physiological relapses after minimal amounts of physical or mental exertion. Other common symptoms include cognitive dysfunction, sleep disorders, and muscle pain.

If exertion intolerance is the distinguishing symptom, then a steady increase in physical activity — the intervention called “graded exercise therapy” promoted by PACE and included in the former CDC guidelines — would likely be considered contraindicated. In multiple surveys, many more patients have reported getting worse rather than better from graded exercise therapy. The form of cognitive behavior therapy used in PACE could also be contraindicated, since it too was designed to boost patients’ activity levels — in this instance by helping them overcome their purportedly “unhelpful” beliefs about having a medical disease.

The CDC website now advises patients to develop an individual management strategy with a health care provider and warns them not to overexert themselves. (However, a separate page about ME/CFS in the CDC’s features section still includes advice about “graded exercise.”) Yet Dimmock and other critics remain concerned that, among other problems, the website still offers little information about severely disabled patients.

In an email sent in response to questions about the changes, the CDC did not specifically mention graded exercise therapy and cognitive behavior therapy, or concerns about the PACE trial, but said that it rewrote the website section to avoid “confusion” associated with its previous recommendations and to eliminate medical jargon.

“We continue to believe that exercise can be useful for some ME/CFS patients, and also are trying to emphasize that people need to be careful not to overdo it and push themselves so far that it harms their health,” the emailed statement reads. “We also state that talking to a therapist to help find strategies to cope with their illness may be helpful. We know from our past discussions with patients and their loved ones that there has been confusion about what we recommend related to exercise and therapy. We hope that the updated website provides more clarity.”

The CDC also promised to disseminate information about the website changes once the agency has updated the companion pages for health professionals.


NOTE: The author of this post has played an advocacy role in working with physicians and patient groups to challenge the efficacy of graded exercise and cognitive behavior therapies for the treatment of chronic fatigue syndrome.

David Tuller is a lecturer in public health and journalism at the University of California, Berkeley.

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38 comments / Join the Discussion

    I am a recovered CFS patient. I was ill for 5 years. What helped me the most, was living in accordance to my energy levels at that time. And taking walks, eating ecological healty food and the condition gradually improved over the years.

    Reply

    Thank you for the article! The CBT and GET section on the CDC’s website and they’re approving citations of the PACE trial and similar have been incredibly damaging. To patients whose doctors rely on that information and to patients who are too disabled to work but whose disability claims are adjudicated using that information and cruelly dismissed. To patients trying to understand their disease the CDC’s website gives misconceptions which could easily lead to them damaging their health further. To patients trying to get a “circle of support” among friends and family so important chronic illness the CDC’s support of PACE and GET undermines that when friends and family perceive the patient as unwilling to continue trying GET (though, really, unable) when the CDC recommends it.

    Thank you for covering this important issue. Of course they didn’t apologize or concede *they* did anything wrong, though. I am reminded of the quote:

    “This struggle may be a moral one, or it may be a physical one, and it may be both moral and physical, but it must be a struggle. Power concedes nothing without a demand. It never did and it never will”
    –Frederick Douglass.

    If many readers are inclined to view CDC as a scientific institution instead of a bureaucratic one simply because they *do* Science on many other issues…I would recommend reading Osler’s Web by Hillary Johnson which shows the truly repulsive lengths they went to mock and demonize sufferers of CFS. For an organization to be truly a scientific one instead of a bureaucratic one, or some other kind, the activity of *doing Science* should be primary and above all other incidental activities. As regards Myalgic Encephalomyelitis, this is clearly not the case with the CDC.

    I realize it may be somewhat unsettling for professional scientists and doctors to think that some of the institution most hallowed in the media produce science incidentally to real, though unstated goals such as increasing money, increasing spheres of influence, prestige (even the petty desire to feel superior to “stupid patients”) etc…

    However this must be acknowledged and confronted if we are to redress the injustices Myalgic Encephalomyelitis patients have suffered at the hands of the federal research apparatus–and prevent future diseases from being subjected to the same treatment.

    Reply

    Great article making several important points.
    Even after the PACE trial has been proven to be a fraud, it still seems to dictate how people suffering from ME/CFS are being treated all over the world. That has to stop!

    Reply

    Thank you for pointing out that the CDC website update continues to carry materials in links that do recommend CBT and GET so this is only a cosmetic fix.

    A full update of the CDC website needs to include immune dysfunction, impaired energy production, broken oxygen exchange system, cardiac abnormalities, and higher risk of cancer. And it definitely needs to include the severity of ME experienced by patients in the low moderate and severe group. These patients are homebound and/or housebound and often need caregivers 24/7 in order to stay alive. The vague suggestions on the CDC site that diet and lifestyle adjustments are all that is needed to treat this population needs to be confronted.

    People not familiar with this illness coming to this updated website will continue to have a misconception about the severity of ME – as defined by the International Consensus Criteria – http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

    Reply

    Professor Malcolm Hooper (referring to the BPS psychiatrists who continue to propagate the myth that ME/CFS is merely a ‘false illness belief’, in the face of 30+ years worth of biomedical evidence demonstrating an organic basis for every symptom): “Never in the field of modern medicine has so much harm been done to so many by so few.”

    Dr. David F Marks, when referring to truth behind the PACE Trial, calls it “one of the greatest scandals in the history of medicine.”

    Reader, please understand, ME/CFS is not a trivial disease. A study from DePaul University published just last month, shows that people with ME/CFS are more functionally impaired than people with Multiple Sclerosis.

    Yet ME/CFS is thought to be twice as prevalent as MS.

    Patients with this disease have been abused, neglected and stigmatised for decades. Thank you Dr. David Tuller for continuing to expose this horrific truth to a wider audience.

    Reply

    Thanks to Dr. Tuller for his investigative, reporting and writing efforts. Important work here! Lives are on the line.

    Reply

    Brilliant article. Let’s hope that the uk nice guidelines are similarly revoked very soon for the huge benefit of all concerned

    Reply

    THANK YOU David Tuller for all your hard work. I hope the CDC will keep working with the patient community to keep the CDC website very accurate. gET is harmful to people with ME. Our ME experts state CBT is ineffective. But effective for people that need help coping.

    Yes the CDC website on ME is certainly better! Now we need to retired CFS and have one case defintion that is used for ME so we have research done comparing ME. It’s been 30 years no cure, miniminal pharma interest and no FDA approved treatment.

    Reply

    I have P.O.T.S, postural orthostatic tachycardia syndrome. One of its many effects is chronic fatigue. My doctor had me on graded exercises. It did not go well. I’m glad to hear that the CDC is beginning to realize how damaging this is.

    Reply

    CDC are correct in this statement.
    New and fresh Norwegian research on ME, by Dr Fluge and Dr Mella, proves that ME is in the blood.

    Post exercial malaise (PEM) is a basic symptom in ME.
    Graded exercise and cognitive therapy can NOT cure ME.

    It is wake up time.
    If you are serious in your journalistic handwork; please take note of real fact, not fake news.
    PACE is fake.

    My most deepfelt respect goes to CDC, for searching the truth and solutions for millions ME sufferers all over the world.

    Kathrin Storheil, Norway.

    Reply

    Great article!

    Reply

    Great article and great to see the CDC moving forward in line with research findings. Still lacking information on physiological abnormalities. heart rate based pacing, metabolic testing to fat/carbohydrate crossover….. Exertion intolerance is the key symptom and so why isn’t it being measured, quantified??? Why aren;t mroe exercise physiologists involved in care and movement/rest/exetion practices? Very little $$$ very little research. Thousands and millions can be raised for visible illnesses and acute care….we do eveything possible to save prem babies but noting to help those struck down with ME/CFS….an enormous cost to the community and the individuals…. Even just from an economic view point more should be done

    Reply

    It’s nice to see the CDC move in the correct direction toward accurate information. The shoddy pace trial “research” will most likely be retracted shortly as It has been discredited by multiple sources.

    Reply

    It’s a relief that CDC seems to be emerging from the murk of PACE errors, though nor reassuring that it is taking so long. Thanks UpDark and David Tuller.

    Reply

    Thank you for this article, David. The following comments are addressed to the CDC:

    We are well passed the 30 years since outbreaks from Incline Village and Lyndonville, to name a few, and the CDC is still pondering whether getting a therapist for coping is the best available treatment. Tis is the real tragedy. No treatments, no medical specialty, very little research.

    While this quiet move to withdraw graded exercise therapy and cognitive therapy as a treatment, there has been no government effort to find cause and treatment, a single FDA approved treatment for ME-cfs for these 30 some years. Compare this to HIV/AIDs which experienced outbreaks in the 1980’s, 35+ years ago. Billions were injected to find cause, treatments and hopefully cures. With a few dozens of FDA approved treatments, free drugs, and even housing for the homeless, HIV patients can now live a normal life and expect to live as long as a non HIV infected citizen.

    CDC must step up their efforts to control Me-cfs through research, advocacy, stigma reduction and appropriate dissemination of the most recent knowledge to all physicians around the country. Simply removing a mention of graded exercise therapy is not enough and too little, too late.

    Reply

    Interesting. It looks like this is an area where the ground is shifting, but those at the top want to manage things in a way which lets them avoid having to apologise for past mistakes.

    Reply

    “We continue to believe that exercise can be useful for some ME/CFS patients”

    This is worrying. Exercise is not beneficial for ME patients because ME patients are intolerable to exertion. There is no such thing as “some” patients benefiting from exercise, if they benefit they don’t have ME. Clearly the CDC don’t understand this basic concept yet. Saying that some patients benefit is the exact same nonsense that the BPS have being saying for years.

    “We also state that talking to a therapist to help find strategies to cope with their illness may be helpful.”

    While I have no issue with patients using a therapy to help them cope, this should not be confused with a treatment. I hope the CDC says similar things for other diseases such as cancer.

    Reply

    While I share your concern that the CDC must be carefully watched given our history with them, I don’t agree that there aren’t ME/CFS patients who could benefit from mild, self-paced exercise to reduce de-conditioning. Dr. Klimas offers suggestions on how to exercise to safely exercise with ME/CFS though it may be only for mild and moderate cases. You’re right about one thing though. Neither exercise nor therapy cures ME/CFS.

    Reply

    Exercise & counselling provides general benefits for people suffering from a plethora of diseases.
    Nothing special or specific for ME/CFS
    That double blinding doesn’t & cannot exist in these trials speaks volumes
    Unfortunately, psychology will never have the same level of rigour & objectivity as the hard sciences.
    Ironically, this fact causes cognitive dissonance within the minds of psychological researchers.
    Schadenfreude – you have to milk it when you can…..!!

    Reply

    Thank you David Tuller for this article, and Undark for publishing it.

    The CDC choosing to remove CBT and GET from their recommendations for ME is a big step, and one which we can only hope will be followed by many other countries without further delay. When I was first ill, it was other patients who helped me slow the downward health spiral I found myself on. Doctors just saw the word “exercise” and told me to take brisk walks, which of course turned out to be a vary bad idea indeed.

    Reply

    Thank you to David Tuller for writing this article and to Undark for publishing it. Thank you!

    Reply

    Firstly, well done Kindlon. Secondly, I would assume an anchor bias from the authors who are most unlikely to explore an organic cause (or even understand it) for the presenting fatigue and poor physical functioning. Its not too far from where we are today in other areas of medicine including paediatrics, where some children presenting with acute onset psychiatric symptoms are treated with anti-psychotics and anti-depressants without attention to the pathophysiology, just a clinical diagnosis. The PACE study clearly demonstrates the climate of our beloved health system where tasks are given a financial tag referred to as a KPI, people/patients/conditions/interventions and outcomes are incentivised. Providers are paid out according to their successes and fined if they fail to achieve, so we must find a way to measure it. PACE like many other evidence bases do not serve the public necessarily, they convince the patient it is they who are poorly concordant or resistant to the “programme”. In this instance, the authors must have been bursting at the seams to protect their agenda, their elevated academic status compounded by publications in the lancet, financial investments whether it be personal or for the benefit of their institutions. This is, in its entirety, a complete betrayal to the public, an almost self perpetuating disease affecting some academics who in real terms only own disproportionate and excessive self interests, I think there’s a cure for that, group CBT?

    Reply

    Thank you David! I would LOVE to find a medical professional of ANY SORT within a days drive of my house who has training in managing the care of someone with ME/CFS, including a therapist! It rather renders this quote from the CDC as a meaningless joke, “We also state that talking to a therapist to help find strategies to cope with their illness may be helpful.” … By-the-way are they talking about a Physical Therapist or a Psychological type therapist?

    Reply

    Thank you for publishing this article. Let us hope this is a start and the UK will follow the lead America has given. I have had ME for nearly thirty years. My daughter was completely bedridden with the disease throughout her twenties and early thirties. What saddens me is that I see young people and children after all these years still losing their lives as we have done. Let’s find effective treatment, not this nonsense which had cured no-one and made so many much worse..

    Reply

    Thank you to David Tuller for writing this article and to Undark for publishing it. There is a very long way to go but the CDC decision is a step in the right direction.

    As David Marks, editor of the Journal of Health Psychology, has stated, the PACE trial is “one of the greatest scandals in the history of medicine” https://twitter.com/newhealthpsych/status/889964875790901249

    Reply

    With so many patients having reported harms from these ‘therapies,’ it is unconscionable that they continue to be the standard of care in the UK and the Netherlands and worse yet that medical boards in those countries are still allowing studies to go forward based on these theories. Human subject research where there is a serious risk of harm is a violation of internationally recognized medical norms. Hopefully the CDC’s move represents the beginning of a sea change in how this long neglected disease is understood.

    Reply

    Shoukd have been removed a long time ago, but great to see progress in US and other parts of the world. It’s very disturbing thinking of all patients that have been harmed and hurt with devastating consequences due to PACE and the minority of U.K. “scientists”. What about opening ears and listening to patients, then building a hypothesis? It is about time that the medical community in large challenge the insane idea of deconditiong and all the methodical flaws. As pointed out by many, PACE is a textbook example of how not to conduct a study.

    Reply

    CDC said: “We also state that talking to a therapist to help find strategies to cope with their illness may be helpful.”

    This is complete rubbish. What does a therapist know about ME? Absolutely nothing. They can’t help a patient manage this illness. Patients need experts who actually know about living this nightmare. So far, that consists of about a dozen physicians across the US, and other patients. The best source of information on how to manage ME is the patient-run forum PhoenixRising.me, where an ME sufferer can learn about the latest research as well as the experiences of thousands of other patients.

    The CDC website changes are an improvement, but the CDC and NIH policy of non-research continues. Unlike in the UK, where official disdain for us is on display every day, US agencies have recently adopted a public relations strategy that blows just enough smoke to calm the angry bees, while continuing to rob the hive and refusing to adequately fund real research or disseminate accurate information.

    It seems that many patient advocates believe there is a new policy. This suggests that the PR campaign is indeed a tremendous success, so score one point for CDC/NIH, and I congratulate NIH Director Frances Collins for once again outmaneuvering those troublesome patients.

    Meanwhile our suffering continues unabated, over 3/4 of ME sufferers never even get a diagnosis, most doctors still believe we have a psychiatric illness, there are no FDA approved treatments, and CDC can’t even be bothered to issue a clear and unambiguous statement to doctors that they need to take this devastating illness seriously and stop abusing us with disdain, GET, and CBT.

    But hey, we got a new Webpage! CDC gave us a Crumb! Hurray for Us!

    Reply

    After 35 years of ME, can’t help but agree with you. Recently a Dr remarked, ‘Well if there is such a thing as ME, you are right up there’. Did I like the ‘if’ – I did not. I think Australia follows UK’s questionable lead, but at least some researchers are taking it seriously. We needs must be grateful for small mercies.

    Reply

    From what I have seen about the (tobacco) science of the PACE trial, the study should be removed at once and GET should become a criminal offence. In fact it could be framed as violation of the human right to access to care.

    Reply

    Thank you for publishing this clear article.

    It is great that the American CDC is taking some moves forward. Unfortunately here in the UK the misguided psychiatric lobby still hold sway and our NICE (National Institute for Clinical Excellence) are looking like they will continue to support ‘graded exercise’ and the PACE version of CBT despite no meaningful supporting experimental evidence.

    Reply

    It’s very important that all references to GET be removed because there is nothing more dangerous for people with ME. No evidence exists which shows that CBT and GET are appropriate, useful or safe treatments for Myalgic Encephalomyelitis patients. Studies involving miscellaneous psychiatric and non-psychiatric ‘fatigue’ sufferers, and their positive response to these treatments, have no more relevance to M.E. sufferers than they do to diabetes patients, patients with multiple sclerosis or any other illness. Thus, patients with M.E. are routinely being prescribed these treatments on what amounts to a ‘random’ basis medically.

    Reply

    If i’m not mistaken, the CDC also changed the way they reference the disease from using what is often viewed as the more trivializing name “Chronic Fatigue Syndrome” (CFS) to include the neurological disease term “Myalgic Encephalomyelitis” (ME) in “ME/CFS”, which seems to be the preference of most patients and the term most often used by the research community.

    Reply

    Great article and so good to see that the CDC has made an efforts to take steps in the right direction. It’s not perfect yet but it’s coming.

    Reply
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