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 am a physician/scientist whose wife has ME/CFS. To say that cognitive therapy doesn’t work says that you don’t understand cognitive therapy and what it really does. It is the cure for almost nothing, but it can help when used in combination with other modalities. There is a nice study coming out next month (11/18) on the use of DCA (dichloroacetate) in treatment –it helped 40% of those who suffer from this. The treatments resemble those for chronic pain in that there is significant individual variation and multimodal plans are the most effective.
I think you have a different perspective of ‘nice’ than many of us.
There are lots of problems with the DCA research. There’s a long discussion of the pitfalls of the March 2018 study here: https://www.s4me.info/threads/treating-patients-suffering-from-myalgic-encephalopathy-chronic-fatigue-syndrome-me-cfs-with-sodium-dichloroacetate-comhaire-2018.2885/
I just wish researchers would stop hyping poor results. It’s not helping.
Some days I can exercise and I feel great for a little while and then next thing I know I am in bed by 8 PM and sleep until 8PM and can barely more for two days. I walk into walls and my brain gets fogged. I long for a cure. I am constantly riding a rollercoaster and never know what the next day will be like.
This is the story of my life exactly: now it is hour by hour, minute by minute
I wish I would have seen this article before I just spent 2 days at Mayo learning about CBT and exercise!!! Extremely angry and frustrated.
I’m not surprised. Sadly, medical education is lagging in this area. Mayo is very much behind. The NYC health website is better.
It is a travesty that Mayo Clinic, of all places, has not, will not, update their diagnosis/treatment of this horrible ailment.
I was diagnosed with Chronic Fatigue Syndrome in 1994 by Dr Sivaprasd an infectious desease Doctor for Monmouth Medical center in New Jersey. He prescribed 10, 20 now I am on 30mg of Sinequan. That has boosted my immune system so I don’t catch every sore throat that I am exposed to. It also helps my gastric reflux. It is obvious if I run out of my medication. I also need the pneumonia shot every five years. My blood work shows that my numbers for resistance go low. Last year I was very sick with acute tracheobronchitis secondary to influenza AH3 and RSV hospitalized for 6 day’s. That was my 4th year after the pneumonia shot. I do get the flu vaccine every year. You can contact me if anything I have experienced can help your data base. I just went to the allergist after abstaining from Sinequan for 2 weeks. She feels allergy shots will help me. I have been coughing ever since February 2017 when I was so sick.
It’s now 2018, and Kaiser Permanente is still recommending GET and CBT for any of it’s 11 million members with ME/CFS. For patients, it’s as if nothing has changed.
How much longer must we fight with our own doctors about the (non)effectiveness of these treatments?
Links to Kaiser Permanente GET and CBT recommendations for ME/CFS:
http://k-p.li/2iTlCOj
http://k-p.li/2mPciN0
This article is so right, any kind of exercise worsens my chronic fatigue syndrom. I wish I could lower my Lyrica and Cymbalta, altough taking twice a dosis also have to be on stong qties. Of pain killers and sedatives.
Someone made a really good post in my ME/CFS group about a book for kids that explains our energy using marbles in a jar. It was on amazon. Then someone else commented using teen speak and cell phones how a typical teen wakes up fully charged at 100% whereas we wake up with a faulty battery and some might be at 40% others 20% and it drains quickly. I thought it was an excellent explanation of our abilities. Might be something worth using at future appointments or reevaluations for services.
you all did great at pointing out the incorrectness of CFS treatments . My son lives w/ us for having zero ability to earn, AND for being turned down by a GA judge (later upheld) for not being disabled. If they only knew how his quiet way of study, budgeting energy & positive attitude are the ONLY things keeping him “vertical but low activity.” Is there no way that social security (he paid into the program from age 16 to 26) MUST recognize this without a judge NOT allowing disability SS insurance? Can you all help to make soc. sec. a genuine safety net?? . Is there a way to force social security to be the safety blanket when the medical evidence substantiates it???? would love to hear from you.
Pretty clear here re what not to do, but unclear what does work…??
Pacing. That’s about all I’ve found. Pain meds to manage the pain and pacing to keep the pain low enough for the meds to work. When I sat on my bum for a few weeks, my pain was very low and I was doing good. Thought I was even going into remission but then I went to the grocery store, got held up and pressed for time, and decided to speed shop the rest. That was last week. I still sit here in globs of pain. So much for remission. You just have to find your sweet spot even if that means doing nothing to maintain some functions. Not much of a life, but better than sitting here in massive pain. Some are lucky with ME/CFS and don’t have the pain, just the fatigue. I wish I was one.
I’ve become somewhat of a summit junkie in the last two years, and there’s a lot of cutting edge information out there that, unfortunately, is not making it to most doctors. Why? Because a) they believe everything the CDC tells them, and b) they don’t read the latest research. About 1-1/2 to 2% of doctors have become very frustrated with the bandaids that conventional medicine offers, usually because they or a family member have had a serious illness that they couldn’t help, so they started reading PUBMED, where all the research papers are found. They’ve become a growing movement of Integrative and Functional Medicine practices.
About 2 years ago, I was starting to walk with a cane, because I had such pain. I started watching online summits and now I’m walking 3 miles a day with little pain. It’s all about inflammation, caused by food sensitivities, heavy metals, environmental toxins, and parasites. They are now reversing things like CFS, fibromyalgia, heart disease, even dementia, Lyme disease, and a host of other illnesses.
There’s a new series on autoimmune disease (CFS is considered autoimmune) that may be very helpful. https://autoimmunesecrets.com/
Well pacing is the only universal tool that we can all benefit from. That means balancing activity and energy, and not using more energy than you have. It’s a good idea to only use 70-80% of your daily energy limit, so that you can save it up for the future. In time, the relapses become fewer and farther apart, although you won’t be running any marathons.
What many doctor fail to do is get a grasp of the impaired aerobic threshold. Patients should always try to keep their AT below ([220 – age] x 0.6). A healthier person might have it at x0.8 or even x1.0, but we can’t manage. Once you approach your limit, stop and rest. If you do this, you can stave off the crashes (at least the ones caused by physical exertion). If you exceed this limit, you generally need to rest at least three times as long as you were exerting yourself (if it was two minutes of exertion, rest for six, for example). If you’re lucky, you might catch yourself in time to avoid a crash, if not, expect problems a day or two down the line.
There are medicines that work for some and not for other Jared Younger thinks he’s spotted three subtypes: viral, autoimmune/inflammatory and metabolic. Each may need slightly different treatment regimes.
The viral group, for instance, either has reactivating viruses or an immune system which nevertheless *thinks* it’s dealing with a virus. This group may find antivirals or even antiretrovirals useful.
The autoimmune group may find autoimmune treatments or anti-inflammatories useful.
The metabolic group may need to look at hormones, energy metabolism processes, etc.
Personally, I use a combination of low-dose naltrexone (theoretically balances Th1/Th2 immunity, reduces microglial inflammation and boosts endorphins for a low-level painkiller effect, although more trials are needed), inosine pranobex (an antiviral and immune modulator, which seems to get rid of my flu-like symptoms, some of the accompanying muscle pain and my recurrent swollen glands), a range of anti-allergy meds as needed (my allergies have got worse with ME), a few supplements (co-enzyme Q10, NADH and glutathione are the ones with best evidence–there’s no point spending a fortune on loads of them), D-ribose occasionally (a sugar that feeds your mitochondria, which seem to be dysfunctional in ME), and lots of Epsom salt baths (the magnesium is a muscle relaxant). I also had to correct low vitamin D levels and cut out sweeteners to reduce liver enzymes, and I’ve taken up a ketogenic diet (neuroprotective and used successfully to help treat many neurological conditions) which primarily helps get rid of the brain fog.
I’ve seen people use other things, some of them more radical, including medications for arthritis, myasthenia gravis and even HIV. What works for one person doesn’t necessarily always work for another, though.
Clinical studies are currently looking at Ampligen, suramin and cyclophosphamide. Rituximab has been ruled out for general use (although it might prove useful for a small minority).
GET is ineffective even by the loose standards of an unblinded, open-label trial with subjective measures. Whether it works on patients with a general fatigue state and not ME is yet to be seen, but the importance of exercise seems over-stated. It needs to cause weightloss to reduce inflammation, and that means aerobic activity which the ‘graded’ approach would seem to rule out.
Activity-wise, qigong and tai chi are probably best tolerated. They can be done sitting down and aren’t as strenuous as some types of yoga can be. They’re very energising while still being gentle.