The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals seeking care for their ME. For years, #MEAction and other advocates have fought for the removal of GET and CBT treatment recommendations. The Mayo Clinic’s change is important, even though incomplete, so we want to walk you through a history of some of the advocacy efforts that led up to this, and some reflections on the work still left to do. The Mayo Clinic sees over a million people annually from all 50 states. Its large reach and consistent ranking among top U.S. hospitals means that clinicians and patients across the country view it as a reputable, trustworthy medical information source. Therefore, incorrect information posted on its website can have widespread, detrimental consequences.
Graded Exercise Therapy is Harmful to pwME
GET and CBT are outmoded treatment recommendations based on the flawed, thoroughly discredited disease theory that ME is a psychogenic illness resulting in deconditioning. Julie Rehmeyer has discussed the flaws in these treatment recommendations and the debunked PACE study based on this theory, as have David Tuller and others in recent years. In the U.S. context, this disease theory does not square with the widely-embraced 2015 National Academy of Medicine report, which found that ME is not psychological or a problem of deconditioning. Instead, the NAM found substantial evidence of neurological, immunological, autonomic, and energy metabolism impairment. It also summarizes the evidence base for post-exertional malaise (PEM), an exacerbation of some or all of an individual’s ME/CFS symptoms that occur after physical or cognitive exertion and leads to a reduction in functional ability. Likewise, World Physiotherapy states that “physiotherapists should be aware that progressive physiotherapy can be harmful as people with ME have abnormal responses to exercise including: a lower anaerobic threshold, lower oxygen capacity, increased acidosis and abnormal cardiovascular responses (Carruthers et al., 2012). Appropriate management strategies include symptom-contingent pacing and heart rate monitoring.” This knowledge base combined with surveys of more than 3,000 people with ME who have undergone GET make clear: not only is GET unhelpful to people with ME. It is harmful.
U.S. federal agencies Remove GET and CBT Recommendations, but Leave Much Undone
The Centers for Disease Control (CDC) removed the recommendations to treat ME/CFS with graded exercise therapy (GET) and cognitive behavioral therapy (CBT) from their website in July 2017. But given the harmful effect of these purported treatments, advocates wanted federal agencies to do more. Advocates have consistently called upon them to proactively reach out to the medical community regarding this critical change to treatment recommendations. When agencies failed to do so, advocates went directly to the medical community, urging them to list accurate, appropriate treatment recommendations for ME/CFS on their websites. Still, for years the Mayo Clinic refused to update their own guidelines, and continued to publicly recommend GET and CBT as treatments for ME/CFS.
The Community Takes Action
In 2016, David Tuller published an article in UnDark that examined the negative impacts on patients who underwent GET, including a patient diagnosed by Mayo. Two years later, he chronicled the Minnesota ME/CFS Alliance’s direct outreach to Mayo in 2018. A year after that, he again reported on the Mayo Clinic website’s misinformation on ME/CFS. #MEAction wrote a letter to the CDC in August 2019 urging them to be more proactive in addressing inappropriate guidelines on the sites of some medical societies and medical education providers, and called out the Mayo Clinic’s continued promotion of CBT and GET specifically.
The doctor replied to me, “Well, if they’re doing it at the Mayo Clinic, those treatments must be working for someone.” And I said, “No, it doesn’t. It’s bad science.”Liz Burlingame, #MEAction Georgia
In both 2019 and 2020. #MEAction Georgia advocate Liz Burlingame pressed this issue with the CDC’s Dr. Beth Unger. Liz shared how livid she was when, as a long-term patient, her physician suggested at a follow-up that she go to the Mayo Clinic. “And I told the physician – “the Mayo Clinic still treats their patients with cognitive behavioral therapy and graded exercise therapy, which we know harms patients.” The doctor replied to me, “Well, if they’re doing it at the Mayo Clinic, those treatments must be working for someone.” And I said, “No, it doesn’t. It’s bad science.” Liz went on to explain: “But the fact that those treatments harm patients didn’t affect the physician at all. And we need the CDC to make public the fact that recommendations that used to be on [the CDC’s] web site and are still being recommended to patients at the Mayo Clinic are based on bad science and they’re harming patients. What is the CDC doing to correct this misinformation and to better educate physicians that what they’re seeing is post-exertional malaise and their patients cannot be psychoanalyzed out of it or exercised out of it? We need better science.”
A Pivotal Call
After this advocacy effort, in late 2019, Dr. Whittemore of the National Institutes of Health (NIH) and Dr. Unger of the CDC finally reported that they “had a phone call with one of the managing editors at MayoClinic.org,” who said they would “prioritize review of their CFS section.” This is why #MEAction has such an intense focus on federal agency work. When we move the needle with our federal agencies, private organizations follow. The advocates that reached out, reported, and advocated got the attention of federal agencies, and the federal agencies got the attention of the Mayo Clinic.
Advocates Take to Twitter
But of course, individual advocates continue to make the difference. In January 2020, Mary Gelpi and Biomedics ME/CFS publicly called out Mayo Clinic on twitter, screenshotting images of Mayo’s CBT and GET recommendations. Biomedics ME/CFS wrote, “@MayoClinic you listening? How could you get this so wrong? This info was never correct. Ever.” and Mary Gelpi replied “This needs to change. Doctors have quoted Mayo Clinic guidelines to me when administering MECFS advice. It is outdated and stands to harm #pwme. Please @mayoclinic, update your information & your website. Millions are waiting.”
This time Mayo Clinic’s twitter account actually responded to Mary Gelpi and promised to pass along the updated research to the editor.
In August 2020, Mayo Clinic updated its CFS webpage by removing the GET treatment recommendation. Long-time advocate Mary Dimmock said on Twitter that Mayo’s incremental change “Needs more but step in right direction, at least no longer recommends exercise to overcome ‘hypersensitivity.’”
So many advocates have worked incredibly hard to push for change. #MEAction is glad to see that the Mayo Clinic has taken a step in the right direction and urges them to continue to make necessary improvements. It is a big deal that these explicit recommendations of GET and CBT have finally been removed. But it also points to why it is so important that our federal agencies take a more proactive approach to addressing the stigma around ME/CFS and the medical misinformation that continues to allow CBT and GET to be presented as treatments for this disease — treatments based on a flawed theory that ME/CFS symptoms are a result of deconditioning and fear of activity. The burden should not be on advocates to have to point out each instance of CBT and GET as a recommended treatment for ME/CFS and lobby over and over again to get them removed. The CDC needs to make well-publicized statements that clearly state that CBT and GET are not recommended for ME/CFS. It is also essential that advocates who have been on the front lines need to be an integral part of the development of this language. Addressing instances of CBT and GET promotion one at a time is laborious and far too slow. Further, having conflicting information on different sites makes healthcare professionals less sure than ever about what is an appropriate recommendation and what isn’t.
Mayo’s site is still problematic and more change is needed
The current Mayo Clinic section on ME is still problematic. They don’t say the words, “Graded-Exercise Therapy” but they do describe what is essentially graded exercise therapy under their “diagnosis and treatment” section, without a clear disclaimer of post-exertional malaise: “Exercise regimens that start at a very low intensity and increase very gradually over time may be helpful in improving long-term function.” They also emphasize psychological stress and only list one doctor available in their network that could treat ME, which is unacceptable for a disease that affects millions of Americans. There is still much to do in regards to demanding accurate updates to sites like the Mayo Clinic. We encourage you to stay engaged. Take action wherever possible to continue to educate clinicians across the country and the world. Join with us in demanding U.S. federal agencies clearly disavow GET and CBT treatment recommendations and take a more proactive role in addressing stigma and misinformation around ME/CFS in the medical community.