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.
Suffered with this for years! Get feeling good and try to exercise again puts me in malaise for days! Have to sleep my way out of it!
Great. Now why don’t they address a real killer Lyme, with its 7 co-infections which can give you all of the above hell on earth and worse, kill you.
I’ve been dealing with a diagnosis of ME/CFS for 14 yrs, and just recently a new doctor recommended I get tested yet again for Lyme, but not the “regular test” from a regular lab. She recommended I order a test kit from: igenex.com, which would do the testing at a deeper level, often uncovering disease that previously was not picked up. Does that make sense to you? Any tips in general to ensure I am being properly diagnosed? Any comments much appreciated. Neil
PS. This is my 1st time on this site
I’m afraid that there are doctors encouraging patients to spend money on testing that often leads to misleading claims about them having Lyme and needing expensive treatments. I’d run a mile from any doctor encouraging the use of IgeneX testing.
As an Incline Village survivor and original prototype for ‘Holmes CFS’, I can assure people that the CDC – NIH and no one else has “changed course”.
The entire medical profession are are bunch of scheming con artists pursuing their own agenda.
They don’t give a damn about science.
How can I be so sure?
Simple. NONE of them have come back to Lake Tahoe to get their facts straight. They capitalize on confusion, so confusion is what they create.
This isn’t science. It’s pure fraud.
I have had chronic fatigue for a lifetime… gone to many drs… with no solutions or help… i am tired of living this way..😢
I do accept as true with all of the ideas you have offered for your post. They are very convincing and can certainly work. Still, the posts are too brief for novices. Could you please prolong them a little from next time? Thank you for the post.
s recently diagnosed with this,it was at first a relief that so many unanswered questions finally had answers,but then trying to get people to understand that this is a legitimate disease and not someone being lazy or “wimpy”.How can we advocate to generate awareness and support to the general public?
As a physician and a wife with ME I was appalled at the lack of understanding of this disease. I didn’t want to care for my wife but needed to. After antivirals, a VERY light exercise regimen and some herbs that focus on cellular energy she is making slow progress. I was put on this pathway by a psychiatrist in Denver,CO. He had taken on several of these ME patients because no one else did–he put them on the antivirals–a PSYCHIATRIST. I was part of mainstream medicine for 33 years–we are losing out to chiropractors because they give a shit about people trying to make it through the day.
It is unbelievable that Dr.s and the Mayo Clinic did not listen to patients! Because of this these institutions caused more harm to patients. Mayo Clinic continues to use these unproven and dangerous treatments. Very sad!
I’m a psychiatrist and have had whatever-this-collection-of-illnesses are for at least 30 years. I’ve struggled to remain partially functional, and it is a daily struggle for myself and others I’ve known who have it. This struggle morphs from one debilitation to another. Keeps you guessing. About 12 years ago, I was able to wean off pain medicine. That was unintended “good luck timing” since doctors are now “discouraged,” meaning scrutinized and penalized, for writing controlled substance prescriptions. (see footnote.)
Off pain meds and 18 months of post abstinence syndrome, I still had the fatigue. To myself, I was “home free,” good enough to start a fuller life and well worth the cost of my savings. As I began my “new” me, I realized my stamina existed mostly in my head. But I pushed on, continued my learning about acupuncture, aromatherapy, singing ragas, etc. I imagined I would eventually “reach” normal, a place on my bucket list. They were purposeful years and I learned that normal is an unfortunate obsession of our culture. “It is, what it is,” is a cliche that deserves an earnest audience.
What I did do, which I will share, is to start to drop the anger toward myself and toward medicine for not meeting “my” expectations. Life, I realized, was not taking directions from me. Since I am a doctor, I don’t know which anger “was” harder to drop, and to be honest, it’s not a once and done event. Dropping anger is a daily practice.
Why do it?
Because anger drains our energy and narrows our vision. That is a fact, at least for me. I have trigger points on my arms that rear up in pain, as it is now writing this, while I feel anger. Reading the comments below remind me of my own stories of frustrations and dismissal. I can still get worked up about the narrow mindedness one encounters, if you or your disease does not fit a category. PC may catch on as a political movement, but it has yet to create the default of tolerance among individuals.
If you have trigger points, learn about them. You don’t need to wait for a study or a practitioner to confirm they are significant. Many self-help books deal with them. You will be less helpless if you know what you can do about them. Learn the ways you can become your own practitioner.
Many readers here have mentioned “pacing.” Amen. Pacing means letting go of what I used to do. That acceptance, another daily practice, invites me to more fully appreciate what I can do. This lousy-whatever-it-is has fashioned me a compelling life. I may not like it at times, but I am never bored.
I am almost 73 now and I’m okay. I have two couches, two beds and chaise lounge where I live. When I am not working, I am resting in one of my “stations.” There is much wisdom here in what readers have already said. I’d like to finish with, Don’t give up on yourselves and health. We live in a big world with many different approaches to healing. If you have faith, cultivate it if it leads you to a place of peace. Many of us can’t wait for the “Double Blind Studies” to prove the veracity of fibromyalgia or the existence of G-d.
Peggy Finston MD
footnote: The “opioid OD epidemic” that has robbed patients of relief may be most likely from the influx of smuggled street drugs tainted with fentanyl. Not prescription drugs.
As an MD, and a ME/CFS patient, this is shockingly perpetuating the ignorance of the medical community about this disease.
As the article states, “recent studies from Stanford, Columbia, Cornell and elsewhere have demonstrated that ME/CFS patients suffer from immunological, neurological, and other systemic dysfunctions.”
Having a good attitude and thinking good thoughts will be no more effective here than it is in fixing a broken leg or cancer.
Diagnostic tests and treatments that address chronic viral infections, like Epstein Barr, autoimmunity, inflammation, oxidative and nitrosative stress, mitochondrial and metabolism issues, hormone and nutrient deficiencies, and other real medical problems associated with this illness can be used today to vastly improve patients’ outcomes.
Treatments include antivirals, like Valcyte; immunomodulators like IVIG, low dose naltrexone, Rituximab, cyclophosphamide, and plasmapharesis; hormones like hydrocortisone, fludricortisone, thyroid, DHEA, and pregnenolone; mast cell stabilizers, and nutrients like amino acids, B vitamins, antioxidants, phosholipids, CoQ10, and NAD+.
Doctors should be made aware of these, how they can help and be willing to prescribe them.
Thank you for posting this, especially as a dr. I just came from mine and was so frustrated, discouraged and angered that I found this article to once again… try and help myself.
I was diagnosed back in the late 80’s. 12 years after my systems started in the Navy, they have a special blood test that will show your NK Cell count (How many are active) I was sleeping up to 20 hrs a day. The special Immunology clinic at the Miami VA found that 10mg once a day of Prozac reactivated the NK cells. Hope this helps anyone with CFS. I no longer sleep 20 hrs a day and was able to go back to work. I still have some symptoms of CFS today that I live with.
I was told for years I was depressed and I tried everything antidepressants out there not one took the pain or tiredness or brain fog away . I felt like I was going crazy my husband didn’t no how to help me and my 3 boys just wanted their mom back. I finally went to my dr ( I’m a military spouse so I see a dr at the base we were on) and just said look my life is good I’m not depressed but I can’t even do a simple walk around the block with my kids because it takes me 3 or 4 days to recoup from it , my body hurts for no reason I’m forgetting things that I never used too sometime when I talk I can’t seem to find the right words, and I can sleep for 16 hours and still feel tired I can’t remember the last time I woke up and felt refreshed. Yes I have 3 kids yeah my husband is a drill instructor and gone a lot but it’s not a “life” type of tired or “life” type of moodiness it’s a I know something g is wrong I know this isn’t normal type of feeling. I had one sr tell me well if you lost weight you would feel better I said yeah your right but if I can’t physically do it for more then a day with it taking days to recoup then I won’t even lose weight ( mind you I’m only about 20 lbs over weight) would love to lose it but I physically can’t. So dr sent me to RA specialist he tested for lupus , ms , fibromyalgia, like disease and a few other things then asked me if I even had Mono ,? I was like yes I did I had a very sever case my 8th grade year he sent me for blood work 3 days later I go back and he says well good news and bad you don’t have lupus or ms or lime disease but you do have Systemic exertion intolerance disease , use to call it chronic fatigue syndrome. I’m was glad to here is wasn’t lupus or anything but kinda left with a ok wtf feeling , he says I’m going to start you on 27 mg of concerta (adhd) off label use but there is quite a bit of new info that these types of meds help . I was like ok I will try and it did work but caused some pretty bad migraines so I called him he said ok let’s try a different drug in the same type of family call adderall I said but if this caused migraines I guess I will just have to learn how to deal. Well I tired it and started feeling so much better I was back to my old self , husband gets new orders and we move now my new dr refues to continue the treatment because she doesn’t agree with it sends me to new RA he won’t see me he doesn’t treat this SEID tells me to talk to a pain management dr I call they don’t treat this either so now I’m feeling lost upset and like my new doctor thinks I’m seeking drugs and I’m just at a loss on what to do . If there was a way to feel better and not need it I would take it in a heart beat but in the 5 years I have been dealing with this the last 9 months on one 20mg xr adderall a day I have felt back to normal . I wish the medical field would teach that off label use is worth trying and if something really truly is working for a pt with SEID don’t make them feel crazy educate your self on the issues if your not Familiar with this line of treat me ask someone don’t just refuse to continue treatment for a pt when it’s been working
Adderall is basically speed, so I would hope it would give any normal person extra energy. But would you do coccaine or speed for the rest of your life?
Jenna, I’ve asked myself that question. I’m on pain meds now. I don’t see myself ever being off of them and surviving. I’ve had the conversation with my husband about illicit use and even though I’m opposed to using illegal drugs, I can actually sympathize with those that do so, not to get high, but for pain relief or for severe fatigue. I cannot imagine living the rest of my life, the way I’m feeling currently, and to think of such thing, sends my mind spiraling. I can only hope my pain management doctor will increase my meds as needed to get me through this miserable existence.
If Adderall were to work for me and give me energy, (it doesn’t), I would gladly use it for as long as it continued to do so. It’s certainly a choice each individual needs to make but we should all have that right to make those choices for sure. Take care.
I take Adderall. I suffer through my work days, and sit in my recliner until it’s time for bed. I only take it on the weekends so I can clean up from work days, and so it doesn’t build up to a level of tolerance where it doesn’t work. It is the only thing that makes me (sort of) normal. I will take it for the rest of my life or until there’s a healthier treatment.
Thank you
, that was good
read and to know what to do..
Andrea, same here. Drs. Tests years of trying antidepressants. . Was prescribed pro vigil but expensive and insurance would not cover. Then adderall xr and I felt normal again. Then moved and new dr would not prescribe. I live alone and not able to do much at all. Can’t work. Hope a new dr will get me in track because I have little savings left. Don’t understand why if one gets a new drs from moving does one have to go through the tests all over again. I went to rumerology, neurologist, psychologists, acupuncture, physical therapy, chiropractor etc. I just want back on the meds that work so I can get a job to care for myself and provide rent and food money. I accept this disorder and i am limited, but i need to pay the basic bills! Hope you found a good dr.