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.
The CDC has consistently lied about many things, and hidden others, such as burying the data that showed MMR vaccines have a very real connection to autism. Yet, 3 years after the lead researcher became a whistleblower, they have yet to admit their fault. There is little chance they will apologize for any errors on their website, and probably even less chance they’ll notify doctors and clinics about the change. This is a political agency with an agenda, and the agenda is not health, it is kowtowing to the interests of pharmaceutical companies, and its own patents.
A growing body of research shows that microbiome issues (including “leaky gut”) and heavy metals, and even parasites (and not wonder–they are opportunistic) are at the core of CFS. You won’t find that information coming from the CDC, because they do not keep up to date on the research, especially if it interferes with the cronyism that is a hallmark of most federal agencies. Instead, you’ll find it in PUBMED and in the offices and clinics of functional and integrative medical practitioners.
(aaSFPN)??? Imagine all the People for Decades who have been dismissed & left to Rot in Hell not counting the Deaths as well…A Criminal Public enquiry is warranted & Lawsuit compensations are in Order
No mystery to me! After I got treated for Lyme with WAY too many antibiotics “chronic fatigue” set in, amongst other metabolic issues. If I even think about exercise (I was a 4 hour a day athlete)I’ll collapse. Thanks for this article. etcfmt.com
Dep respect for your story
I have had CFS for over 20 years. I know that more physical exercise and phycotherapy is not the answer, it is something that the body needs to function properly that people that do not have this have in their system. Oh we need answers and what can alleviate CFS.
I’m 56 years old and have had cfs since I was 26 yrs old. I was a runner. I ran 5 miles a day, 6 days a week for 10 yrs and lifted weights 3 X A week. I was thin, I ate healthy. Now I’m 80lbs overweight from taking Lyrica for fibromyalgia. My doctor forgets how I started out with profound fatigue, thin and otherwise healthy. He just looks at me now and says “you know cfs doesn’t exist anymore. It’s depression. So I’ve just had 20 years of depression? I guess that means the two antidepressants I take, Lexapro and abilify don’t work? I’m furious that it’s been 20 years and there is no treatment. What are you guys doing in Atlanta?
Rebecca, there is a lot going on in medicine beyond the CDC and its outdated guidelines. I suggest you consider seeing a functional medicine physician and a biological dentist. They look for causes of autoimmune and inflammatory conditions and help patients address them, rather than just prescribing Rx to alleviate symptoms (often with side effects). Not everyone will recover, but for some, addressing triggers such as Lyme and coinfections, mercury and heavy metals, mold and fungi, and other things that stimulate viral reactivation help a lot.
Thats why I work on my project nobism. Now we get told a lot of stuff and we can only respond with our experiences, but an experience is easily ignored. Thats why we need to have personal data that shows what we are and were doing in the past.
If we would change doctor, we could also give faster and better information about our past.
I was a HUGE athlete, trim, traveled, had business, was journalist and AFTER I took too many antibiotics, “Chronic Fatigue” set in, so it’s NO mystery to me HOW I got it and why! In fact I didn’t even call it CF till I heard a report on the CDC guidelines being updated and realized that’s what “it” was. Here’s my solution: etcfmt.com
Thank you so much! I’m from Germany and the decisions of the CDC are also relevant for me because they influence treatment recommendations worldwide. I have lost most of my 20ies and 30ies to this disease, but am not allowed to try any treatments other than psychotherapy or exercise (tried that and became house- and mostly bedbound, thanks!). So now there’s just zero treatment for someone in their late 30ies who would like to be able to work and found a family–or shower. I hope people will finally realize that this is not physical vs. psychological, it’s that psychological treatments simply don’t work here, lack any evidence and have hold back research and clinical trials for 50 years. Let’s solve this!
So Join nobism and we’ll see if we can fix this as patients together
nobism is setup as the best patient diary there is, just because you can keep track of anything you feel (symptoms) and anything you do to feel better.
Nobism want to engage patients, join them and give them access to find answers together, using their data.
The more patients JOIN, the bigger the knowledge you will have.
This project is setup by a clusterheadache patient. We’re fighting the other way around. We think some alternative treatments could help us better than regular. But its hard to get a voice. With nobism we hope to create that for any group that is helping patients
The PACE saga is a travesty that has damaged many patients. For patients to deteriorate while being pronounced cured is wrong.
Worse, its still touted as the strategy by major medical databases, Mayo, Healthwise, Up to Date, etc. while treatments such as antivirals, immunotherapies, and nutrititional therapies that are helping many of us are ignored or even actively discouraged.
Patients die from this disease. Some commit suicide due to its hopelessness. Many suffer for decades.
That this small group of self serving researchers can derail treatment for so many is tragic. They have successfully stopped valid treatment for ME/CFS in the UK and other countries, leaving thousands of patients adrift.
It is really good news that NICE is finally looking into the excellent science that has been evolving, showing that ME/CFS is a multi-organ system, likely autoimmune disease, with a plethora of biochemical abnormalities that no amount of talk therapy or exercise can cure in the absence of top notch medical treatment.
So change patient experiences into patient knowledge to strengthen our voices
I Hope everybody will join nobism. nobism is a way to change our patient experience into patient knowledge to support our position in healthcare.
This problem occurs because we can only change things in our heathcare now with our experiences…..that to few people take serious. Chjanging these into knowledge, time base, will show effectiveness of these treatments and if we should go on with it or not.
for those interested her is the nobism url. https://nobism.com/
Thank you for this article. I am currently writing a prisoner who is a Gulf War Vet about discovering I was infected with Mycoplasma Fermentans Incognitus. My discovery began in the mid nineties when I attended a Gulf War symposium in Anchorage, AK. If you are interested, please let me know.
I too am a Gulf War vet suffering with GWI. We all seem to share this in common. I think genes have something to do with it. I’d love to know more about the vet you’re in communication with.
Physical exertion has been a significant issue with me for as long as I can remember. I can feel fairly well & energized one day followed by extreme fatigue the next day or days. Multiple times I have participated in exercise programs only to drop out due to the fatigue, pain, & frustration. My physician has always recommended exercise & is perplexed by my inability to do so. I understand why if information & updated research findings are not available to the Medical community in order to help care for patients with ME/CFS.
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