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.
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.
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.
I don’t see how any competent physician could consider CFS not to be a real disease. The famous neurologist S. Weir-Mitchell wrote detailed case reports during the U.S. Civil War describing exactly what we would recognize today as CFS. Weir-Mitchell was an expert at detecting malingering, and he didn’t believe these people were malingering. If there was anybody who would be skeptical, it was him. He thought it was a real disease, and as a keen observer he recognized one of its causes was the stress of forced marches.
AMMA THERAPY, a Chinese form of medical massage based on the movement of energy through the meridian system in the body, is a highly effective therapy, along with an anti-inflammatory diet, in eliminating this condition.
Thank you for this article.
It is disappointing, to put it mildly, that the CDC continue to drag their feet on this, and not commit to a proactive program of professional education.
That needs to change.
I applaud this article. It’s most unfortunate that the very medical/research institutions we count on for guiding optimal, successful care for patients become caught up in popular “therapies” and easy “cures.” The University of California, San Francisco [UCSF] is one such institution. While their research is responsible for numerous advances in medicine, UCSF nevertheless has hopped on the bandwagon of “integrative medicine,” a conglomeration of so-called alternative medicines and therapies that have no scientific basis in fact. Patients are routinely referred for acupuncture, Rolfing, and other unscientific “treatments.” It is interesting to note that the medical community of the EU has condemned integrative medicine and is seeking to ban it from national healthcare programs.
I well recall the days when Restless Leg Syndrome was regarded the same way Chronic Fatigue Syndrome is today–largely imaginary, the province of females and therefore not worth bothering about. Then the Mayo Clinic suddenly recognized RLS and drug companies produced effective medication.
I hope that people suffering from CFS will soon be recognized as having a legitimate, disabling condition and that serious attention will be given to finding science-based medical therapies.
I’m glad that you point out that the slowness on recognizing RLS was due to sexism. I wish, every time I read an article critical of the CDC (or similar organization) for slowness on CFS, that people would mention sexism as THE single most important reason there is little progress. Do people not recognize this, or are they afraid to tell the truth about it? It does not help us to hesitate or prevaricate about this.
I’ve just now looked at the section above the “Leave a Comment” box – the section titled, “More From Other Publishers”.
There are FOUR links to stories promoting exercise-and-therapy…
(bangs head on wall, over and over)
This is a big deal. Invisible Autoimmune and Late stage Lyme sufferers and also related Lyme Literate community recognize the faulty treatments of often misdiagnosed ME/CFS as Late Stage Tick Borne Related issues.
I would now love to see studies that compare the course of disease of CFS and FQAD, to see CFS is undiagnosed FQAD.
Actually the explanation for why CDC changed their website and refuses to publicize the change is pretty simple: NIH and CDC are running a public relations campaign. Patient advocates have been managed into near silence, while the policy of non-research continues and patients continue to suffer and die.
NIH Director Collins and his CDC colleagues have been taking more and more heat in recent years, so they have adopted a new strategy to improve their image while they continue to refuse to adequately fund real research and inform physicians and society about this illness.
I readily admit their strategy is working brilliantly. Well done, Dr Collins! I’m sure disability insurers, who deny claims on the basis that ME is a “mental illness”, are well-pleased with your agency’s work.
Meanwhile, thanks to the tireless efforts of Dr Tuller and many other advocates, the UK promoters of therapy-and-exercise as a cure-all for ME are having a bad year – their marketing campaign known as the “Pace Trial” is headed for the bin and they are unable to back away from their profitable tar-baby.
The Pace People are now so confused that they actually claim, in a peer-reviewed paper no less, that standing on paper circles, shouting “Stop!”, and waving hands can cure young people with ME. Of course, one does have to cough up 600 pounds, payable to the Lightning Process, to learn how to do this properly. When it fails, it’s always because the patient didn’t do it right, or they didn’t believe hard enough, or they haven’t given the LP People enough cash yet.
Even NICE, the UK agency responsible for clinical care guidelines, has finally admitted publicly that exercise-and-therapy doesn’t work and may be harmful. Just last week they announced the guidance will be reviewed and rewritten.
While the situation for UK patients is still dire, there is an energetic (for us!) and growing movement to demand proper diagnosis, care, and research. I have every reason to believe they will eventually get it.
But in the US, Collins and associates have managed to blow enough smoke to calm the angry bees, while they continue to rob the hive and save the disability insurers from bankruptcy.
Thank you, this article is very helpful. I will share it with doctors I know that still believe ME is psychogenic and/or that graded exercise fixes it. Maybe Cochrane will be the next to change its public statements? 🙂 That would affect care recommendations around the world.
Yes, Cochrane currently have a review in their library which judges the PACE trial as “at low risk of bias” and the review concludes that exercise therapy and CBT are effective and safe. Feedback on the review has not been answered adequately by the authors. And they are now conducting a second review of exercise using individual patient data with the PACE trial chief investigator now on the author team! Cochrane need to do more to fix this than change their public statements! It’s very good news that NICE have decided to review the guidelines but shamful it has taken so long and has been hampered by academic conflicts of interest.
Thank you so much for printing this wonderful article that encapsulates the main problem that people with ME/CFS and their doctors have been facing. What a mess the CDC (and others) have created for us. Hopefully this is a sign that there is a change happening at the top. Who knows, we might actually get some real treatments eventually, if they stop standing in our way?
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