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For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy known as cognitive behavioral therapy. The problem was that the evidence doesn’t support these treatments.

This summer, after years of resisting pleas from patients, advocates, and clinicians, the CDC quietly dropped the treatment recommendations from its website. Its decision represents a major victory for the patient community — and for science. But the country’s lead public health agency still has a long way to go to meet its responsibilities to the estimated 1 million Americans with this disease.

Exercise and psychotherapy might sound like the most benign of recommendations. But the hallmark symptom of chronic fatigue syndrome (also called myalgic encephalomyelitis, or ME/CFS) is that overexertion triggers relapses that can leave patients much, much sicker, as the Institute of Medicine documented in a landmark 2015 report. So a steady increase in activity can easily cause further harm, not benefit. In multiple surveys, more patients report getting worse, not better, from these “graded exercise” programs.

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The theory underlying the two discarded treatments arose in earlier decades when the medical and scientific communities largely dismissed the devastating illness as illusory or psychological. According to that theory, such patients harbor mistaken beliefs that they suffer from an actual physical disease. As a result, they remain sedentary out of a misguided fear that activity will make them worse. They then develop severe deconditioning, perpetuating their symptoms.

However, more recent studies from Stanford, Columbia, Cornell and elsewhere have demonstrated that ME/CFS patients suffer from immunological, neurological, and other systemic dysfunctions. And scientists have reported that the bodies of ME/CFS patients generate energy inefficiently if they push beyond their limited capacities.

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Moreover, the key piece of evidence the CDC once cited to support its recommendations of exercise and psychotherapy has been debunked.

That evidence was a multimillion-dollar British study called the PACE trial, the largest ever of the illness. The first results appeared in the Lancet in 2011, with other findings published in Psychological Medicine in 2013 and many other journals. But the trial had a host of flaws that render its reported results nonsensical and uninterpretable. Most remarkably, the investigators relaxed their outcome measures so dramatically during the trial that participants could deteriorate during treatment on the key measure of physical functioning and still be declared “recovered.” Because of these changes, the findings were far more impressive than those the investigators would have obtained using the methods they originally proposed, as reanalyses of the trial data have shown.

The larger scientific community is up in arms over the problems with PACE. Earlier this year, more than 100 experts signed an open letter to Psychological Medicine (orchestrated and signed by one of us [DT]) stating that the trial’s flaws “are unacceptable in published research” and “cannot be defended or explained away.” The letter requested immediate retraction of the claim that patients “recovered” from the treatments. The journal refused the request.

Yet the trial and its claims remain hugely influential. In the U.S., Kaiser Permanente, the Mayo Clinic, and WebMD all continue to promote the therapies. So does UpToDate, a popular decision-making tool for clinicians. In the United Kingdom, graded exercise and cognitive behavior therapy continue to be the most widely offered treatments for the illness through the National Health Service system. However, the country’s National Institute for Health and Care Excellence, which creates clinical guidelines that are widely followed, recently announced that it will be conducting a “full update” of its current recommendations, citing the CDC’s decision as one reason for the update.

Despite the significance of the changes, few medical professionals are aware the CDC has dropped the exercise and psychotherapy recommendations. Nor do they know about the extreme care with which people with ME/CFS need to regulate their activity. If your doctor were to diagnose you with this condition today, the odds are good that you’d be advised to exercise your way out of it and to consult a psychotherapist.

While the CDC deserves credit for having removed information based on bad science, that alone is not enough. The agency must also undo the damage it has caused.

First, the CDC needs to acknowledge that it got things wrong. So far, the agency has stated in response to questions that the changes were made because “there has been confusion about what we recommend related to exercise and therapy,” and the agency had not intended to recommend the PACE trial treatments despite using identical terminology. Given that ME/CFS advocates lobbied the CDC for years specifically about the problems with recommending these therapies, that explanation is hard to take seriously. An honest acknowledgement of error will go far toward reestablishing trust with the ME/CFS patient community.

Second, the CDC must actively disseminate the news that it no longer recommends these two ineffective and possibly harmful therapies and that no legitimate evidence supports their use. This should be part of a muscular plan, coordinated with the National Institutes of Health and other agencies, to counter the prevalent myths about ME/CFS among doctors, other health care providers, and the general public.

Third, the agency needs to reach out directly to health care and medical organizations, such as Kaiser Permanente and the Mayo Clinic, to urge them to stop recommending the treatments and ensure that the information they provide is truly up to date. That outreach should include the UK’s National Institute for Health and Care Excellence.

For decades, the ME/CFS patient community has been waiting for the CDC to get this right. The agency has finally taken a step in the right direction. Now it needs to redouble its efforts to find legitimate answers to the many outstanding questions about the illness and to investigate treatments that might actually work.

Julie Rehmeyer is a contributing editor to Discover magazine and author of “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand,” a memoir describing the science, history, and politics of chronic fatigue syndrome. David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME/CFS patient community generously donated to a crowdfunding campaign in support of Tuller’s position at Berkeley.

  • ME (at G93.3) is not CFS (R53.82); there is no such thing as a ME/CFS patient.
    The CDC never recommended CBT/GET to ME patients. Before this change, they had separate pages for ME and CFS. So to ME patients, this is a step back, not forward.

  • The PACE Trial team (White, Chalder & Sharpe) absolutely hate having public debate about their work. They prefer to have a quiet word with publishers & university heads to try to stop wider discourse

    Michael Sharpe has spoken about his dislike of social media and tried to prevent the publication of the PACE edition of the Journal of Heath Psychology.

    All of which suggests an underlying control freakery.

  • Why did it take so long for the CDC to reverse course on the debunked treatments?

    That is because Peter White and his PACE trial colleagues had managed to influence and co-opt even the US CDC with their fraudulent pseudoscience research. It is remarkable that Peter White and the British PACE authors had managed to not only monopolise all positions in the UK in relation to CFS/ME but even had the US government advocate and promote this fraudulent science on their behalf for financial vested interests.

    The CDC’s person in charge of CFS was Dr William Reeves and this is what he said about the PACE trial and its principle investigator to a Health and Human Services Chronic Fatigue Syndrome Advisory Committee on May 27 2009:

    “The collaboration with Peter White is largely because Peter White came to us when the national health service in the UK was trying to design its program and formulate recommendations about what the health service in the UK should do. We’ve consulted with them as far as our ideas and our expertise, and we collaborate with Dr. White on the PACE trial. He’s an unusually intelligent individual-you’ve read some of his comments on some of our articles-whom we enjoy sparring with. He is an expert on autonomic nervous system function and he’s highly instrumental in all of the hurdles, both with patients with the government and with physicians, in trying to put together, given the current state of knowledge, a national program.”

    It has been removed by HHS but been archived. The history of this sorry sage cannot be deleted permanently.

    https://web.archive.org/web/20090827011825/https://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.html

    It must be embarrassing for the CDC to admit to this now. The best thing they can do is that they should be fully transparent and admit to all the problems in the past and restore confidence in the CDC so that patients can move forward . It may be that they were grossly misled by the PACE authors. Or maybe undisclosed financial inducements were paid to get them to support the PACE authors and their insurance paymasters.

    The CDC should come clean about how Peter White who has significant financial interests with the reinsurance industry including Swiss RE and other disability insurers and his PACE authors who also have serious concealed insurance conflicts of interests, managed to capture health agencies on both sides of the Atlantic to promote his bogus science for the financial benefit of the global insurance industry.

    I am sure CFSAC or other investigations will find out the truth soon so best to come clean now.

    The truth is coming out on one of the biggest scandals in medicine of our time thanks to Dr David Tuller.

  • Excellent article. The Lyme disease community has suffered for decades from the same corruption and lack of accountability from the CDC. The agency has ignored their legal obligation to respond to citizen petitions asking why the CDC continues to promote the restrictive, outdated, and delisted Infectious Disease Society of America (IDSA) Lyme treatment guidelines on their website, while ignoring the International Lyme and Associated Disease Society (ILADS) Lyme treatment guidelines, which are currently the only treatment guidelines developed under Institute of Medicine guidelines and the only current Lyme disease guidelines listed on the National Guidelines Clearinghouse. Unlike the IDSA treatment guidelines, the ILADS guidelines recognize the current limitations of the clinical research and the potential cost to the the patient of under treatment. Physicians can base treatment length on the clinical response of the patient and patient values. This is evidence-based medicine.

    On the other hand, the CDC continues to endorse limited treatment options for patients diagnosed with late-stage/neurological Lyme disease in spite of a recent Cochrane review determining that there hasn’t been even one high-quality clinical trial on the neurological treatment of Lyme disease published in the United States. Four retreatment trials for those suffering from post-treatment Lyme disease syndrome continue to be promoted by the IDSA/CDC as conclusive evidence that retreatment doesn’t work even though a 2012 statistical analysis by Delong et al. stated that “Those who wrongly conclude that the trials found no benefit from retreatment commit an even greater error, as such a statement is demonstrably false.”

    The CDC-endorsed IDSA Lyme treatment guidelines describe the symptoms experienced by post treatment Lyme patients as nothing more than the “aches and pains of daily living” ignoring studies such as the SLICE studies of John Aucott, which have demonstrated functional decline accompanied by elevated cytokine levels in a significant percentage of post-treatment patients. Studies by Monica Embers on macaque monkeys with disseminated Lyme disease have shown evidence of continued inflammation and infection in monkeys treated with one month of doxycycline. The one-month treatment exceeds IDSA/CDC-recommended treatment length by two weeks.

    The CDC website continues to support highly insensitive immune-based tests, while telling physicians to avoid scientifically valid direct detection tests such as DNA-based tests.

    For years, progress towards finding relief for the millions of CFS/ME sufferers has been stymied by a gross lack of research funding. I am sure the logic behind this goes something like, “If CFS/ME patients are essentially malingerers and if therapy and exercise helps them to get better, why fund additional research on their condition?” Acknowledging the inadequacy of the flawed research puts pressure on the agency to justify their lack of action. Likewise, how long will it take the CDC to finally acknowledge the weakness of the scientific evidence behind their restrictive testing and treatment recommendations for Lyme disease and tick-born coinfections and to call for vastly increased funding for better more varied clinical trials and accurate tests. Recently Congress has called on the CDC to justify their minimal spending on tick-borne illness compared to other diseases such as West Nile and Zika virus. Will the CDC ignore their legal obligation to respond to Congress like they have ignored their legal obligation to respond to the citizen petitions? How do we call this agency into account?

  • Thanks to the authors for taking on an important topic. I hope from this start that you be bolder, reach farther, and set higher goals.

    I had fibromyalgia for 20 years, which is generally viewed as on the spectrum of CFS/ME. Now I don’t. My advice to patients is, don’t wait for the CDC. If you are not getting help from your doctors following the guidelines, cast a wider net. There are rapidly developing fields of functional medicine and integrative medicine that use evidence-based approaches based on success in the clinic. They serve as the leading edge of what will eventually become standard practice.

    Like many chronic diseases, FMS and CFS/ME are forms of multisystem dysfunction that have their roots in an unfortunate combination of genetic susceptibilities and exposures, which can differ by the individual, and may be overlapping and synergistic. A skilled and experienced physician will test for these factors, and treat them. Triggers may include pathogens like Lyme and coinfections, heavy metals like mercury from fillings or fish, mycotoxins from fungi and molds, viral reactivation in a weakened immune system, gut dysfunction resulting from some combination of the above, etc.

    Some of the tests and some of the treatments are covered by health insurance, and some are not. Fixing outdated guidelines so that insurance will follow, and funding promising research can accelerate the pace at which more people are getting properly diagnosed and treated, and able to return to more productive, enjoyable lives.

    • Laura wrote: “cast a wider net”

      I did, and found mast cells.

      I found out that the “appendix of the immune system” may actually be the master controller of the immune system, as I understand the research. Those tiny one-cell wrecking machines can cure us – or kill us (anaphylaxis).

      I get more relief from three anti-histamines than from a truckload of supplements, anti-virals, antibiotics, etc., etc. I don’t know if this site allows hyperlinks, but here’s a few papers to look for on Pubmed:

      Afrin LB, Often seen, rarely recognized: mast cell activation disease–a guide to diagnosis and therapeutic options.

      Wouters MM, The role of mast cells in functional GI disorders.

      Shibao C, Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders.

      Hyuk Yoon, Mast Cell May Be the Master Key to Solve the Mystery of Pathogenesis of Irritable Bowel Syndrome

      I offer this money-back guarantee: anyone who spends an hour reading about mast cells on Pubmed and Wikipedia will wonder, why aren’t researchers studying the role of mast cells in ME?

  • This looks like another attempt to promote a “pill” by pharmaceutical companies. Gentle movements (such as yoga) and mindfulness practices have been shown to be effective for CFS. For example, mindfulness practices have the potential to bring about changes in objectively measurable biomarkers – see for example the following study: Hoge, E. et al. (2017). The effect of mindfulness meditation training on biological acute stress responses in generalized anxiety disorder. Psychiatry Research.

    • Improvement =/= complete recovery. I’m into all of that stuff, but it maybe only made about <10% positive difference for me. And that something is a physical illness doesn't imply that it requires pharmaceutical treatment. I'm using natural antivirals like cat's claw, l-lysine, thyme among other natural supplements to treat my condition (and they're working).

    • “This looks like another attempt to promote a “pill” by pharmaceutical companies. ”
      Huh? What article are you reading? What this article is about is the fact that, for years, the CDC, as well as other national bodies around the world, have promoted “treatments” that stand a good chance of being harmful to people with ME/CFS. There is, currently, no pill for ME/CFS, so how this article can be about the efforts of big pharma is beyond me.

      Also, I’d be interested to see what references you are using to back up your statement that “Gentle movements (such as yoga) and mindfulness practices have been shown to be effective for CFS.”

  • I’m a psychiatrist/acupuncturist with fibromyalgia. Few responses are more abrasive than having one doctor tell me he doesn’t believe in this illness, another that I don’t exercise enough, another ask me if I have been “stressed” lately.
    This story is much larger than the CDC and makes me want to weep for my profession. When did doctors stop listening to patients and instead start categorizing them into disease labels that were supposed to be answers? Patients who don’t fit the category are told their problem is “in their head.” Medicine needs to own up to quite a few customs that are accepted as facts, despite the evidence to the contrary. We would would be so much stronger and smarter if we could just admit to what we don’t know.
    Peggy Finston MD
    http://www.Acu-Psychiatry.com

    • Very well said, Dr. Peggy Finston. You very accurately described my struggles for almost 20 years now. After quite a few years of being told and experiencing just what you have mentioned above, I just completely quit doing any reading or research on CFS or even just mentioning the name. I became very reclusive and even avoiding any contact with all of my friends and relatives for 19 years now, because of the exact things that you wrote about above and, of course, many more. I have now decided that I am through hiding from everyone simply because I was embarrassed and ashamed of having such a debilitating illness that no one knew anything about or either had already heard or read that it really wasn’t even a real disease.

  • Spot on article. CDC needs to own up to its mistakes regarding ME/CFS and rectify the harm done to patients because of them. Just quietly sliding PACE under the table as if it never happened simply is not good enough. CDC carries a huge amount of responsibility for the stigmatization of this disease in the minds of health care personal and the general public. This has greatly added to the suffering experienced by patients who are already enduring a serious and debilitating multi-systemic neuro-immune disease. And this has gone on for decades. Step up to the plate CDC and take meaningful steps to start turning this around now. It is the least you can do to rectify the horrifying situation ME/CFS patients have been in for a long time, and for which you bear a great deal of the responsibility.

    • This is typical ignorant behaviour from the CDC….How many years has it taken them to face scientific truth in the matter of ME/CFS…..they all need to be fired.. Look at the situation with Lyme disease and treatment protocols, so much cover ups, and it affects people world wide. Same ignorance again…these guys are sucking up tax payer money and taking holidays instead of doing their Jobs….shame on you CDC…

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