By David Tuller, DrPH
As post-covid syndrome has emerged as a major public health concern, so has the likelihood that members of the biopsychosocial ideological brigades will roll out their typical interventions for the “long-haulers”–patients suffering from profound exhaustion and other symptoms for many weeks and months after getting infected with the coronavirus. The situation has created an unforeseen dilemma for UK’s National Institute of Health and Care Excellence, which is currently in the process of revising its misguided 2007 guidance for what it then called chronic fatigue syndrome/myalgic encephalomyelitis and now calls ME/CFS.
The panel that created the 2007 document was dominated by cognitive behavior therapy and graded exercise therapy proponents, so those interventions ended up as core treatment recommendations. Three years ago, NICE conducted a perfunctory review and decided that the guidance did not need updating. An onslaught of negative public comment followed, along with the revelation (on Virology Blog, via a freedom of information request) that the expert review panel was remarkably free of diverse voices. NICE reversed itself and launched a full-scale revision process.
The new ME/CFS guidance was supposed to be issued later this year but the pandemic has understandably disrupted the schedule. It is now scheduled to be released next April. The stakes are high, and not just for the patient community. Careers have been built on touting the benefits of these interventions, despite the failures of trials like PACE and FINE and others of their ilk. If the new NICE guidance rejects this approach, it could have a huge negative impact on their reputations and their ability to obtain further funding to pursue wrong-headed ideas.
Before, no one besides patients and their advocates paid much attention to the anti-scientific nature of the claims being made by the PACE authors and their colleagues. But in recent years, international support for the CBT/GET paradigm has cratered, based on recognition of serious methodological and ethical lapses in major research–although support remains strong in the august halls of psychiatry and psychology departments at King’s College London, Oxford, Bristol and Bath. To the 100+ signers of the 2018 open letter to The Lancet requesting an independent investigation of the PACE trial, it is clear that some of these investigators–professorships notwithstanding–either don’t mind violating basic principles of scientific research or don’t understand these principles in the first place.
The biopsychosocial approach to ME/CFS is grounded in the unproven theory that patients are plagued by unhelpful beliefs about having an organic illness and could recover by increasing their activity to counteract the presumed deconditioning. But deconditioning is not the cause of ME/CFS symptoms. Since patients suffer severe relapses after minimal exertion, strategies designed to promote increased activity are in fact contra-indicated. In multiple surveys, more patients have reported being harmed than helped by graded exercise therapy.
When NICE decided to revise its outdated guidance, many peopleâ€”including meâ€”urged the organization to withdraw the current guidance, or at least to warn readers about possible harms from the recommended treatments. NICE declined. It is likely that well-meaning clinicians around the world are still prescribing CBT and GET to their ME/CFS patients, and will do so until the guidance changes.
Bouts of extreme fatigue seem to be a major symptom of post-covid syndrome. That means many people seeking treatment information from NICE–patients, clinicians, policy-makers–are likely to consult the soon-defunct 13-year-old CFS/ME guidance. If some or many post-covid syndrome patients respond to over-exertion the way ME/CFS patients do, then pushing them to exercise could easily make them worse.
Given this possibility, members of the NICE guidance revision panel pressed the organization on the issue. A post on the ME Association site describes that the effort was spearheaded by its medical director, Dr Charles Shepherd, and Dr William Weir, an infectious disease expert, who collaborated on a letter to NICE. Both men are. members of the NICE revision panel. Other panel members added their names. According to the MEA:
“The letter pointed out that recommendations in the current (2007) NICE guideline regarding the use of GET in ME/CFS could cause serious harm if applied to people who are failing to recover from COVID-19 and who are experiencing Post-Covid Syndrome and other complications.
The letter also pointed out that there is a need for guidance from NICE about the use of Pacing as a sensible and safe alternative to Graded Exercise Therapy in respect of Post-Covid Syndrome.“
Last Friday, NICE issued the following statement about “graded exercise in the context of COVID-19.” The statement clarified that the 2007 guidance is only for those diagnosed with ME/CFS and not meant for people with post-covid syndome:
“NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICEâ€™s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.
As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.
NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.“
This NICE statement does not mean that the biopsychosocial campaigners will refrain from applying what they think they know to post-covid syndrome patients. On the contrary. They have sought to colonize what one might call the “fatigue space” in some of its many manifestations–cancer-related, MS-related, HIV-related, and so on. Post-covid fatigue could represent fertile new ground to plow with their failed biopsychosocial template.