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


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

Leave a Comment / By David Tuller / 16 June 2023
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 These guidelines rescinded the previous recommendations for graded exercise therapy (GET) and for cognitive behavior therapy (CBT) as a curative treatment.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


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I saw a tweet about Michael Sharpe's speech to the American Psychiatric Association and went to their website and sent a message about how wrong he was, mentioning the 2-day CPET study which absolutely PROVES that PEM is not all in our heads and David's Tuller's evisceration of PACE and also a nod to brilliant Dr. Davis and his bedridden son - I doubt I'll get a response, but oh well! I included links to everything. (I can't find the tweet now where I learned about the speech unfortunately!)