Action For ME Report on NICE Guidelines; Brian Hughes on Myths About the Guidelines; Michael Sharpe’s San Francisco Speech

By David Tuller, DrPH

I often feel so far behind in keeping up with developments in this field. Here are a few recent items I wanted to highlight.


Action For ME’s report on NHS adoption of the new NICE guidelines

In October, 2021, after a protracted and highly contentious process, the UK’s National Institute for Health and Care Excellence (NICE) published new guidelines for ME/CFS. These guidelines rescinded the previous recommendations for graded exercise therapy (GET) and for cognitive behavior therapy (CBT) as a curative treatment. The new document is specifically meant to provide direction for the English branch of the National Health Service but is not legally binding on clinicians. Beyond England, NICE guidelines are often very influential throughout the UK and around the world.

NHS England administers health care through local and regional entities called NHS Foundation Trusts and Integrated Care Boards (ICBs). After the publication of the new guidelines, patients began reporting that many local trusts were either not aware of or not adopting the new approach—at least per the information on their websites, which often still highlighted GET and CBT as treatments for the illness. To counter these delays in response, the ME Association began contacting individual trusts and alerting them of the NICE changes, with some success.

Last month, Action for ME published a report based on freedom of information requests that it had submitted to all 162 NHS trusts and ICBs across England; 109 responded. According to a statement from the organization, “Our FOI report has revealed that people with M.E. are dealing with shockingly poor and patchy provision of services in England.” Among the key findings: only 28% of NHS Trusts and ICBs have implemented the 2021 NICE guidelines.

In her forward to the report, Action for ME’s chief executive, Sonya Chowdbury, wrote this: “It is apparent that there remains a lack of understanding of the pathways for patients who present symptoms of ME/CFS. Many of the responses highlighted that there is little to no central data gathering, and lack of follow through in support services through to a personalised care and support plan.”


Brian Hughes deconstructs “myths” about the guidelines

Speaking of the NICE situation…My friend and colleague Brian Hughes, a psychology professor at the University of Galway in Ireland, gave a talk in Belfast on International ME Awareness Day called “Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS.” The conference at which he spoke was organized by the charity Hope 4 ME & Fibro Northern Ireland. (He is a scientific advisor for the group.) 

The video of his talk has recently been posted on youtube, and it is well worth watching. In his presentation, Professor Hughes discusses various misstatements about the guidelines, and about the process for developing them, that “are currently being pushed from certain quarters,” as he noted on a recent post on his blog, The Science Bit. “Certain quarters” is a polite way of referring to the committed members of the CBT/GET ideological brigades.

After publication of the new guidelines, those on the losing side of the debate leveraged their influence to publish high-profile whines in major journals. They mounted and continue to mount bogus arguments in opposing the vision. Some of these myths, as Professor Hughes calls them, are the following:

*“CBT and GET are ‘evidence-based’ treatments for ME/CFS!”
*“Evidence cannot just ‘change’!”
*“The NICE review was driven by patient advocacy!”
*“The defenders of the old guideline are simply standing up for science!”
*“You cannot evaluate ME/CFS outcomes using objective measures!”

(Related: I recently interviewed Brian about his latest book, A Conceptual History of Psychology.)


Professor Sharpe spouts his usual nonsense in San Francisco speech

One of the big losers in NICE’s decision to rescind its previous recommendations was Professor Michael Sharpe, co-lead investigator of the discredited and arguably fraudulent PACE trial—the ur-trial for the misguided psycho-behavioral treatment approach to ME/CFS. As with other research into CBT and GET, NICE’s review of the literature found PACE and related research to be of poor quality.

That humiliating public rebuke has not caused Professor Sharpe to stop touting his theory of a “vicious cycle” causing a syndrome that benefits from CBT and GET. He did this again in late May—in San Francisco, my home turf–in a speech to the gathered eminences at the American Psychiatric Association’s annual conference.

I was lucky to have forgotten about the event until after it happened. Otherwise, I might have felt compelled to attend and listen to his musings out of some sort of misguided sense of professional obligation. In any event, for those who missed it, his talk was written up in an article in Psychiatric News, the APA’s house organ.

Professor Sharpe was the recipient of something called the Adolf Meyer Award. The annual Adolf Meyer Award Lecture given by the honoree “advances psychiatric research by enabling psychiatrists and other conference attendees to hear and interact with outstanding research scientists.” Ok, then.

The article in Psychiatric News included the following passage, which mentions and links to a 1996 study but seems to be describing the PACE study, whose first results were published in 2011 in The Lancet. I assume this conflation was an error on the part of the journalist; Professor Sharpe is proud of PACE and I see no reason why he would tout a 1996 paper instead. Anyway, here’s the key passage from the article:

“In patients with chronic fatigue syndrome (sometimes called myalgic encephalomyelitis), Sharpe described a “vicious circle” of fatigue, fear of fatigue, avoidance of activity, disability, and physiological changes leading to more fatigue. A study published in the British Medical Journal in 1996 compared four interventions designed to gradually reduce avoidance of activity: cognitive-behavioral therapy (CBT), graded exercise therapy, adaptive pacing therapy, and standard medical care.

“Patients receiving CBT had the lowest scores on fatigue (standard medical care had the highest) and the highest scores on physical function. ‘Cognitive-behavioral therapy was both acceptable and more effective than medical care alone in improving patients’ day-to-day functioning in the medium term,’ wrote Sharpe and colleagues. ‘It was also more effective in helping patients to feel better.’”

These claims have all been debunked, of course. It’s a shame that Professor Sharpe’s peers have provided him with yet another prestigious platform to push his pile of horse manure. It seems like some people haven’t had a new idea in 30+ years.