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.
Excellent and well written. This must be shared with the Boston medical community. A noted doctor at a world-renowned Boston hospital told me to exercise — even though I barely had the strength to get to his office. I already knew exercise would make me worse, but he wouldn’t hear that that was my experience. He thought he knew better. Telling a person living with ME/CFS to exercise is like telling a diabetic to eat sugar. Very harmful.
I hope everyone will see the new Sundance award winning film Unrest, as it accurately portrays the experience of living with ME/CFS. There are a few Boston showings coming up. One date is part of HubWeek/GlobeDocs.
In their own “quiet” update this summer, Kaiser Permanente dropped some but not all website references to the PACE Trial. Some of their links that used to point to the PACE trial are now dead links. However, if you drill far enough down into their website, you still see PACE referenced as evidence for CBT and GET.
So essentially, Kaiser Permanente continues to recommend GET and CBT, but in some places now without any source cited as evidence.
The famous “six month waiting period” is a clue to what “CFS” is all about.
No, it wasn’t to deny treatment for six months.
Nobody did that, not even Stephen Straus.
It was to differentiate those who had a slow recovery from the flu like illness from those who failed to improve.
Dr James Jones, the CEBV Syndrome expert, wanted to make a two-year waiting period a requirement for study purposes in the new “Chronic Fatigue Syndrome” but was over-ruled.
Essentially, the core principle was to study the immunological basis responsible for inability to improve, not whip and browbeat those who can until they admit to getting better, and call it “science”
Essentially you’re saying some cases of slow recovery are mislabeled as CFS? Why is that what “CFS is all about”?
Well, what it achieved was harmful. It left people in unheard, unwell and, too often, unable to carry on with rather basic activities of living typically enjoyed bymost persons. Why is it OK to shelve someone’s life?
It’s as irrational as saying we wont address global warming because, ” we just don’t care and anyway,it’s inconvenient to take care of it. Heck, time will eventually make it very clear, no?”
Recovery from viral illness was considered normal.
No reason to study that.
It was the failure to recover from a flu like illness that spurred the CDC to create CFS.
But there were quite a few who had the same flu like illness who did recover, but just took a long time. This was strange, but still fell into what doctors expected from a normal immune system.
The “Chronic” in CFS indicates it was intended for persistence of the disease.
Thank you so much for writing this. Sharing it with everyone I know. What can we do to help pressure the CDC to take the steps you’ve outlined?
Excellent piece! Thanks for highlighting this important issue!
What I find most worrying is that one of the earliest promoters of psychotherapy for ME/CFS (Dr Isaac Marks) was instrumental in torturing LGBT people with electric shock ‘aversion therapy’ in the 70s (alongside Professor Hans Eynsenck). When it became unfashionable to abuse one vulnerable minority group (LGBT people), he transferred his energies to abusing another (disabled people with ME).
Marks and Eynsenck torturing LGBT people: http://gaynewsarchive.org/tag/isaac-marks/
The psychotherapy used to treat ME is often a form of gaslighting, where patients are told their symptoms are either invented or their own fault. We must heal ourselves, we’re told, or else it’s our own fault. If only it were that simple! And now the Lightning Process (based on the pseudoscience of neuro-linguistic programming) is being promoted for use on our children! It’s shocking. Parents who refuse the ‘popular’ psychosocial treatments are wrongly accused of causing Functionally Induced Illness (Munchausen’s by proxy), and their children are taken away or sectioned.
Report by The Young ME Sufferers Trust on false allegations of child abuse against parents with children with ME: http://www.tymestrust.org/tymespublications.htm
I hope Julie or others include this in their next piece. Unbelievable. The gaslighting is so real… happened to me many times with psychotherapists.
That’s why I’m setting up nobism as a clusterheadache patient.
Our patient experiences find out better or bad treatments, it takes years for specialists and a lot of effort, to get specialists and researchers looking into our experiences.
That’s why I setup nobism to connect patients, specialists and researchers using the real time data collected by these patient.
I hope in this way to change our patients experiences into knowledge and show specialists and researchers detailed data about bad or better treatments
Thank you to the advocacy groups and individuals fighting the good fight when many of us can’t. Another step away from ignorance.
Thank you. This is the perfect article to show to doctors who still hold the incorrect view that this illness can be fixed with exercise and a positive attitude. If only it were this simple. More investment into research by the NIH and other research funding bodies is urgently needed to make progress.
Many psychological and behavioural treatments are promoted as effective for physical symptoms based on clinical trials that are unblinded and rely heavily on self-reported health. These treatments are probably ineffective just like CBT and GET for CFS are. A reform of quality controls in this area is urgently needed to protect patients from ineffective and potentially harmful treatments.
A great piece, and a welcome change by the CDC.
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