By David Tuller, DrPH
Two weeks ago, NICE abruptly announced that it was putting the brakes on publication of its new ME/CFS guidelinesâ€”a move precipitated by fierce opposition from key members of the GET/CBT ideological brigades in the British medical establishment. Then last week, Mayo Clinic Proceedings, a well-known journal, published a different set of ME/CFS guidelines thatâ€”like the unpublished NICE documentâ€”specifically advises against the traditional GET/CBT approach.
The article, developed by a group of specialists known as the US ME/CFS Clinician Coalition, is called â€œMyalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.â€ The clinicians make it clear that no treatments have been shown to be curative. Instead, they focus on advice for managing and treating symptoms like orthostatic intolerance, cognitive dysfunction, pain and sleep dysfunction. That the article appears in a publication affiliated with the Mayo Clinic represents something of an ironic twist. The Mayo Clinic has been pretty persistent in offering GET/CBT-type rehabilitation approaches for ME/CFS, despite years of appeals from patients. I hope in future Mayo patients bring a copy of this article to their appointments.
The guidelines focus mainly on the criteria for the illness established in 2015 by the National Academy of Medicine (formerly the Institute of Medicine), but also mention that many clinicians find both the 2003 Canadian Consensus Criteria for ME/CFS and its follow-up, the 2011 International Consensus Criteria for ME, to be helpful. Dr Lucinda Bateman, an ME/CFS specialist in Salt Lake City, reviewed the guidelines in a video posted on YouTube.
Medical journalist Miriam Tucker did her usual excellent job in covering the publication of the guidelines in an article for Medscape, so check out more of the details in her piece. “There are things clinicians can do now to help patients even without a disease-modifying treatment,â€ co-author Lily Chu, a physician and co-vice president of the International Association for CFS/ME, told Tucker. â€œThese are actions they are already familiar with and carry out for people with other chronic diseases, which often have limited treatment options as well. Don’t underestimate the importance and value of supportive care for patients.â€
The authors recognize that guidelines for ME/CFS have taken on added significance given the wave of patients reporting prolonged symptoms following acute bouts of COVID-19. â€œThere are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19,â€ they write.
The guidelines are also explicit about the former standard of care involving GET and CBT, alone or in combination. As the paper notes, â€œthe United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.â€
These guidelines represent the clinical experience of the leading American physicians in the field. These sorts of consensus views, of course, are subject to the biases of those doing the consenting. And it would be fair to note that, in a field with so much non-conclusive data and so much bad research promulgated by the GET/CBT promoters, it is hard to state much of anything with certainty. The guidelines do a good job of acknowledging the limitations of the research and discouraging unsupported claims of benefits.
In contrast, the powers-that-be in Britain continue to hype the GET/CBT approach, as evidenced by their efforts to derail the new NICE publication. Letâ€™s hope that effort doesnâ€™t succeed and that NICE finds the backbone to stand up to these anti-science zealots.