By David Tuller, DrPH
What’s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changed—unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.
For years, of course, CBT and GET were the CDC’s most prominent recommendations. These recommendations were based on the reported findings of the now-discredited PACE trial and other research conducted by the GET/CBT ideological brigades in the UK, the Netherlands and elsewhere. They were promoted based on the unproven theory that people with the illness were seriously deconditioned because of excessive sedentary behavior, itself due to their “unhelpful” beliefs about having an underlying organic illness. GET and CBT were both designed to get people back to their regular activities—through behavioral and psychological approaches, respectively.
Before the website change, the CDC’s imprimatur meant that these two so-called “treatments” were essentially viewed as the standard-of-care in the US, despite longstanding complaints from many in the patient community that the science behind them was deeply flawed. Moreover, given that the core symptom of the illness is “post-exertional-malaise” or some version of that phenomenon, patients also noted that recommendations designed to increase energy expenditure were contra-indicated and potentially harmful. Yet when the CDC removed the recommendations, the agency did so quietly, making little effort to disseminate the information. Nor did the CDC explain that the treatments, and the theory behind them, had been discredited.
I wrote about the change in a blog post on July 10, 2017, not because the agency announced it but because I noticed a mention of it on a patient forum. When questioned at that time, the CDC claimed that it made the change because readers misunderstood what it had meant by CBT and GET. This answer could best be interpreted as a face-saving exercise, not the honest response people have a right to expect from the country’s lead public health agency. The CDC must have recognized that it could not defend the scientific integrity of the data behind the treatments. But it has consistently refused to criticize PACE and related studies, comment on the egregious flaws of this research, or apologize for the years it spent peddling questionable medical information.
Why does that matter? Because leading medical centers around the country—and that means you most of all, Mayo Clinic!–have still not gotten the message. On the “chronic fatigue syndrome” pages on its website, Mayo continues to promote an outdated understanding of the illness. One possible cause listed is “difficulty managing stress.” The site features a list of eight possible symptoms, including “extreme exhaustion lasting more than 24 hours after physical or mental exercise”—yet it does not indicate that this symptom is actually required.
And here is what the Mayo website currently states in its section on treatment:
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.
- Cognitive training.Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
- Graded exercise.A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.
The suggestion that increasing exercise will reduce “hypersensitivity” in the same way as gradual exposure to an allergen sounds logical but is not based on the current science. The use of the term “hypersensitivity,” in fact, parallels the speculative but unproven arguments about “central sensitization” advanced by proponents of these rehabilitative therapies for this illness—especially now that they seem to have largely abandoned the bogus “deconditioning” hypothesis. While the “cognitive training” described appears to diverge somewhat from the form of CBT promoted in PACE, the suggestion that this intervention leads to a “dramatically” improved “outlook” in people with this illness is not borne out by any legitimate or robust research that I’m familiar with.
The pages on the Mayo website are dated January 5, 2018. Two of the references listed are the CDC’s website and the Cochrane review of exercise therapies. As indicated, both were accessed online on June 7, 2017–a few weeks before the CDC appears to have removed GET and CBT from its recommendations. Moreover, the Cochrane review—which patients have long recognized as a disaster–has since been republished with the findings revised downwards, and it remains the subject of heated debate.
Other Mayo materials have reflected this misdirection. An edition of the Mayo Clinic Guide to Self-Care, viewed last year in the clinic bookstore, included the following statement on chronic fatigue syndrome:
“Because people with chronic fatigue syndrome may become out of shape, which perpetuates the fatigue, physical activity or physical therapy are crucial. These can help prevent or decrease muscle weakness caused by prolonged inactivity. In addition, you may benefit from cognitive behavioral therapy to help you deal with the illness and the limitations it creates.”
It is unclear whether the Mayo Clinic’s current practice has evolved more than its website and text materials, or whether these have any relationship at all to what goes on during clinical encounters. In any event, the website would, or should, discourage anyone who knows much about the field from seeking help at this world-renowned medical center. Mayo has an obligation to keep track of substantive developments in the field and update its public information accordingly. And certainly the CDC should have reached out years ago to Mayo and other major health care providers and informed them of the big shift in approach.
For its part, the CDC should now at long last provide a straightforward and credible explanation for why it dropped references to PACE and the recommendations for CBT and GET in the first place. No one actually believes the agency’s transparently self-serving argument that people misunderstood what it meant when it recommended CBT and GET. Public health officials have an obligation to acknowledge when they have gotten things wrong and to apologize for their mistakes rather than blaming others for misunderstanding their message.
19 responses to “Mayo Clinic’s Crappy Website”
Thank you for writing this, David. These were many of my thoughts about both the CDC and Mayo’s published info. However, I don’t think the CDC itself is completely up to date on ME/CFS and I think they were reluctant to remove the references. I think they have updated it due to pressure rather than conviction, and that is why they are not spreading the word and correcting institutions like Mayo. It’s a gross disservice to patients out there who are still being dismissed at every doctor’s appointment with talk about their beliefs or who get pushback when they ask for things like a powered, reclining wheelchair or even any wheelchair at all. Because deconditioning. This syndrome is horrific enough to live with without the BS from the doctors patients no choice about seeing if they are to have any hope of getting and maintaining disability or SSI.
I’ve heard that science advances one funeral at a time. If that’s true, we may have to wait decades for CDC’s funeral. The message that it is OK to abuse certain low-status patient populations (there are many besides ME patients) seems to be immortal.
Agency officials constantly cry poverty and that is why they can’t help us, but what is the cost of a press conference to announce that abuse of patients will no longer be tolerated? The cost is that disability insurers would be most unhappy about such a press conference. Officials certainly don’t want to upset their true constituency and possibly jam up the revolving door between industry and government.
I heard that they have a conflict of interest in the form of treatment courses inspired by CBT/GET. They refer patients with “medically unexplained symptoms” to these courses, which involve patients in groups in several sessions. Admitting that their flavor of CBT/GET does not work would reduce profits, first by undermining the justification for these courses and second by taking away an easy way out of cases where patients have some problem they cannot diagnose.
MEadvocacy.org brought this to the attention of CFSAC and specifically to Dr. Beth Unger of the CDC two years ago. It was expected that this would be addressed in short order. Is it any wonder patients become disheartened by the poor US Health Agency response when the Mayo clinic two years later continues to include this harmful information?
Some of my testimony to CFSAC
My name is Colleen Steckel. Diagnosed at age 29 with CFIDS and sick for 28 years. I am an advocate and support group leader and have experienced and witnessed indescribable suffering that has led to at least 37 untimely deaths in the last 2 years alone.
You have heard for decades how severely debilitating myalgic encephalomyelitis is for those of us who fit the International Consensus Criteria. Research funding levels and lack of doctor education show a lack of understanding about the breadth of this epidemic. Know that our doctors are coding us as CFS, ME, Fibro, POTS, etc. so disease prevalence is buried.
Here is a perfect example of the rampant lack of understanding we face every day. As of last week, Mayo Clinic states that treatment for CFS is:
“Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.”
According to this, ME is NOT CFS. We need accurate information disseminated for ME as per the ICC.
The horror stories of mistreatment coming from patients who go to the top clinics like Mayo and Cleveland Clinic make it clear the CDC has not shared our experts’ knowledge about the complex nature of ME’s broken oxygen exchange system, impaired energy production and immune and autonomic abnormalities. This leads to unnecessary suffering and early deaths….”
See full blog here that includes testimony from Eileen Holderman and what we expected to see in 2018 that we are still waiting for!
When the CDC picks and chooses which peer reviewed published science it will and won’t talk about (refusal to discuss PACE), it can become difficult to differentiate between the CDC and anti-vaxxers.
Thank you for bringing this longstanding problem at the Mayo Clinic to public attention.
When organizations persistently get it wrong, I start doubting the organizations IN GENERAL, and find it very difficult to accept Mayo’s words about ANYTHING.
I’m one of those with ME who went to Mayo Clinic a couple of decades ago, for treatment of a non ME non CFS problem.. They gave such horrendous treatment that my caregiver and I hid out and fled the facility after one day of their abuse. They did not believe in ME or CFS, so they wanted to do a complete workup to figure out what was “really” wrong with me. I initially complied, until they started getting results on tests they had no idea how to interpret. They assumed something was wrong with the tests! They would get the same results on do-overs. When I refused to do this any more they sent security staff after me. I consider myself lucky to have gotten away from them relatively (physically) unscathed.
I don’t recommend that anyone with ME or CFS see them for any reason– not until they do a Kaiser Permanente style apology, retrain their staff, and show some progress in understanding what these diseases are and how to effectively treat them.
Thank you, Dr. Tuller. Truth beautifully, powerfully expressed Much appreciated.
What is the current situation for folks trying to get private disability insurance benefits? Do the insurers still claim the illness is a “mental illness” with limited benefits? Who at HHS is connected to the insurers? Who decided to kill the CFSAC?
Every day I hear about “Democracy” over and over, but I can’t even find out who is really making the policy decisions that have profound effects on millions of people.
Seems like there must be plenty of muck to rake…
Does this have anything to do with Mayo Clinic’s ‘powerful’ partnership with Oxford University Clinic, I wonder? (https://mch-ouc.co.uk/about/#a-powerful-partnership) . All roads seem to lead to Oxford when it comes to ME/MUS.
Yes, all roads lead to the Wessely School, especially to Wessely himself. His name turns up in the oddest of circumstances, such as the recent Psychology Today essay that claims the mis-named “Havana Syndrome” that affected diplomatic staff is psychosomatic. It was interesting to learn that the essay’s author, some kind of social scientist, has been publishing “research” papers with Wessely for two decades.
Does “everyone” want Wesseley’s name on their paper, or does he want his name everywhere?
When it comes to ME related policy, pull on the thread labeled “Sir Simon” and the whole rotten enterprise comes apart.
Oxford has a lot to answer for, I think.
“ The site features a list of eight possible symptoms, including “extreme exhaustion lasting more than 24 hours after physical or mental exercise”—yet it does not indicate that this symptom is actually required.”
… that would be because the symptoms is actually Post-Exertional Malaise – not exhaustion. They didn’t even get the symptom correct in the first place. This is part of the “fatigue fallacy” where all they focus on is fatigue to the exclusion of all else.
As you know David – PEM is oh so much more that fatigue or exhaustion.
I don’t think anyone else with me/cfs will be abused by the Mayo Clinic because when I took my PA’s recommendation and tried to get an appointment, I was turned down. My wife searched the internet and found a blog where many people where complaining about not getting appointments and everyone of them had some kind of issue with immunity. Most of them had me/cfs. I guess I should thank my lucky stars they stopped taking “us”.
Another problem with Mayo is that Google quotes them as the primary source for their Information Box, which appears on the right hand side of the page when “ME/CFS” is searched.
In the Google Information Box’s ‘Treatment’ tab it says:
Self-care – stress management
Therapies – support groups
Medications – antidepressants
Specialists – General practitioner, clinical psychologist, psychiatrist
Thank you, David, for writing about Mayo.
What is wrong with the leadership at Mayo and CDC? Are they deliberately trying to hurt already severely disabled people? Or are they so ignorant that they don’t understand how their ignorance is hurting severely disabled people?
I’m literally sitting in a Mayo waiting room right now. To be fair, they’ve diagnosed me with both Fibromyalgia and CFS. The Fibromyalgia, they used an old definition because I didn’t fit the new definition, they said. Which sounded odd but might have basis. I’ve been told the two are treated the exact same way. I’ve been specifically recommended GET and CBT this morning.
The Mayo Clinic has been seeing ME patients since the pandemic began in the early 1980s. By 1987, when I went there to report on their activity in this disease for my book Osler’s Web, they were scamming patients for approximately $20,000, putting patients through scads of unnecessary tests, then prescribing anti-depressants and presenting the bill. The intake staff IDs patients with this disease within minutes, and the outcome is always the same: a pysch eval after thousands of dollars in tests and visits to largely unsympathetic specialists in fields like rheumatology, infectious disease, etc. Patients have been unscrupulously deprived of their inheritances, their possessions and certainly their dignity as a result of seeking help at the Mayo Clinic, widely viewed by lay people as the pinnacle of American medicine. I’ve met people who sold their cars to pay the clinic’s bill. Anyone with ME is well-advised to avoid this Midwestern center of malpractice and denialism as regards ME. I cannot imagine a more nightmarish place to seek help for ME in the US. The Mayo’s website is probably the least of the problems at the unscrupulous Mayo Clinic, an institution that has hugely profited from the ME epidemic while crushing tens of thousands of individual patients since the 1980s. It’s in the clinic’s best interests to keep their website as is. A re-write would require the revelation of decades of “wallet biopsies” and mistreatment. They are unlikely to rewrite their website just because they are asked to do so by patients or their advocates, or anyone else. A more practical approach would be an aggressive campaign to warn ME sufferers in every forum to steer clear of this place, resulting in a boycott. Only when the for-profit Mayo sees a loss in their bottom line can I imagine them changing their tune,