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.
Thank you for this. I will be keeping this for any GP who treats me and dismisses my symptoms. ME/CFS was diagnosed in 2007 with that conformed by articles such as yours which have accurately described my cluster of symptoms which don’t respond to anything but rest and the most careful management of activity.
Excellent news
Thanks to David and many others who continue to fight for the ME/CFS community
My son ALEM Matthees will be so pleased to hear this
Julie and David. I do not know if you write on this type of trial research, but about 7-8 years ago the neurologist gave a sample of Nuvigil, which is currently Provigil (Modafinil) for a week and it changed my life. It was given to treat ADHD, though it treated my tiredness more. I didnt need to go to my car or back room during lunch break to nap. Neither did I need a nap in the car after work before driving home. I also made no errors typing. As a matter in fact, even my typing speed went up. I was able to complete a customer profile on the computer efficiently.
I only mention this because doctors don’t like to prescribe this type of stimulant and prefer medications known to them despite the fact the patients give negative feedback.
ISABEL. Nuvigil is not currently Provigil. These are two completely different medications they work similarly but Nuvigil is NOT Provigil. The generic for Provigil is Modafinil . The generic for Nuvigil is Armodafinil
Thank you God for Julie & David who have written this wonderful article. Your research and article is the answer many of us have been seeking and wanting an explantion for. Now we know we are not “lazy” or that’s not a mental issue as many claim.
I am in my late 50’s and have been to many different doctors and am now being treated by psychotherapist & psychiatrist who claim my illness is ADHD and depression. What I can’t make any of them understand is the ” tired of being tired” issue. I either am on a sleep-wake pattern of every 4 hours all day (as now being up awake at 3 a.m) or sleep about 10-14 hours to feel normal. I’ve been to a neurologist, cardiologist, numerous amounts of primary doctors, and especially an endocronoligist who I “thought” would finally put an end to this miserable feeling. All being a waste of time.
The sad thing is that my children have the same issue and both have recently confessed to me they are seeking help from a therapist to help them with the feeling of depression. As their mother I’ve seen them tired all the time since children.
My 35 year old son just said the same thing to me this week about being always tired despite excersising and sleeping well. It has affected his marriage.
My college daughter on the other hand, who I just visited last week, was put in Psychiatric ward for three days due to complications from the medication the therapist she just started seeing prescribed. Side effects clearly stated depression and suicidal tendacies in teens. I truly believe one illness (CF) triggers the other (Depression) and the latter one is what is only treated.
Everyone who claims they are an expert by giving advice to excersise, eat healthy, or take vitamins think it’s the magic solution to a problem. NO it is not.
I excersise, take vitamins, do not eat sugar, have a cabinet of pills (vitamins), eat lots of leafy greens, no breads, no red meat. And yes, prayer is also added to the bag.
In conclusion, those of us with Chronic Fatigue Syndrome not only sleep away a third (8 hours) of our lives like the general public. We waste away an extra 2-5 hours a day having to “re-charge the batteries” to have a normal life and are forced to give up family, friends, and fun activities to be normal the remaining hours.
Thank you for this well written article that is so truthful. I have ME and am glad the CDC is finally getting it right and hope they do pass on their findings to other major health organizations.
First diagnosed with fibro…then chronic fatigue…after researching discovered it was Lyme disease…by then bedridden for 3 years. After I started treatment am so much better…still have minor chronic fatigue…but mobile. Coffee enemas help to get the toxins out/Meyer’s cocktail IV’s got me mobile/gluten-free is a must to heal the gut…If we are not diagnosed with what is actually causing our symptoms then we can end up a lot sicker and never know the feeling of better health.
Well hallelujah. Ive suffered from cfs since i was a child, i do believe contacting mono when i was ten, changed my whole life and body for rhe worse. After menopause and onset of osteoarthritis, osteopenia, evrry spine and bone condition, along with debilitating autoimmune, cfsfm.. There have been months where i could do nothing but lay in bed and suffer, getting no help. And yes for young idiot physicians telling its in my head, was a mental torture no one should be subject too. My teeth are ruined, because i could barely function, and then to be prescribed fosemax without a dds consult, and 2 yrs later all my teeth just breaking off. I also tried many times to end the suffering i did not see any quality of life, being bedridden, not getting any help, and suffering every minute of the day. What was the point. Finally i found a wonderful pain mgmt dr who understood and agreed anti deppressants do not help with this kind of body shutdown.
I couldnt be touched, couldnt touch anything with severe pain, couldnt walk, had to pee in a bottle by the bed, still do. But opiate therapy changed my life. I could function, i could think and finish a sentence, i could brush my teeth. I had gotten down to 97 lbs because getting food, preparing food, eating was almost non existant. So i had a a few good years of some normalcy…until the stupid stupid morons at the cdc ruined many a life of innocent sufferers and physicians who were persecuted and so scared. So my life again went back to horror and such suffering im sure id i had a gun i would have easilt blown my head off. But i wasnt going to let some idior who has never felt what we go thru decide my healthcare. I went to the street. Which was what they were tring to stop. Just ignorant, narcissistic dictators , im surprised they were not assasinated. And ir sucked though because it took all my income just to be able to function. So it is a catch 22. These poor patients who took their lives because of the cdc, breaks my heart. I was lucky it was scary, dangerous to go to the streets but i be damned some human is going to tellme i cant use what god put on this earth for severe pain and debilitating conditions. I just couldn’t believe they attacked people who could not rally against this nitemare, we who can barely function. So cdc, stay the **** out of my healthcare. And im sure everyone with me cfd,fm, will tell you its not in our minds. Now that they have rewritten the dumb guidelines, hopefully after trying to find a internist that had the balls to say, hey i went to school, i know what im doing, after4 drs. I hope i can get back to some normalcy. Hopefully because if i can get cognitivity and mobility and no pain, i will rally for a class action suit for all the pain and suffering, and being humilitated, and for the wrongful deaths, our dictatorship country inhumanely put us thru. And the drs, that just cut off their patients should lose their licenses because who wants a dr. That is not confident in treating their patients. I dont want to go to them. I hope they are shaking in their boots and sh****g in their pants, hoping noone sues them for wrongfull death.
My 33 year old granddaughter has recently been found to have the major symptoms of CFS. Is your site one that she needs to read in regards to the effects of older treatment regimes?
Margaret, three helpful sites are Phoenix Rising, Solve ME/CFS, and the Open Medicine Foundation. There are many helpful treatments, but unfortunately most doctors are unaware of them.
I have Chronic Fatigue Syndrome with chronic mouth ulcers and now it is in my nose. I have granulomas in my lungs. I have lost my tonsils/adnoise, gallbladder and appendix burst and I was near death on the table with severe dehydration & malnourishment. I have a wonderful & loving husband who is not the cause of this. I see a psychiatrist for depression & a neurologist treating me for excessive daytime sleepiness. I continue to worsen and feel hopeless. I get thrush in my mouth often and my throat has started tightening up when I eat and I now have burning and throw my food up sometimes. Please help me if you can 🙏 Sincerely, Debbie Grant
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Thank you to everyone who shared. I just thought I was crazy.
I to have CFS. My whole body hurts all the time. I too throw up after eating occasionally. All I want to do is sleep. I have been on antidepressants for years.
My quality of life is awful, due to sometimes excruciating pain.
Thank you for any suggestions.