Dr David Tuller: NICE Draft Guidance on ME/CFS Coming Next Month

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https://www.virology.ws/2020/10/08/trial-by-error-nice-draft-guidance-coming-soon/

PLEASE REMEMBER EVERYONE: OCTOBER IS THE MONTH WE NEED TO RAISE $60 000 FOR DAVID TO ENABLE HIM TO CONTINUE REPRESENTING OUR COMMUNITY



Trial By Error: NICE Draft Guidance on ME/CFS Coming Next Month
8 OCTOBER 2020

By David Tuller, DrPH

*October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602

The pandemic has played havoc with everything, including the timeline of the development process for the new ME/CFS guidance from the UK National Institute of Health and Care Excellence. Originally, a draft of the guidance was supposed to be released earlier this year. Following a period of public comment, NICE planned to issue the final version by December. Under the new schedule, the draft version is being released in November, with a six-week comment period to follow. The final version will be released next April.

To recap: The current guidance, which was issued in 2007, recommends cognitive behavior therapy and graded exercise therapy for what was then being called CFS/ME. The committee was dominated by members the CBT/GET ideological brigades. Three years ago, NICE preliminarily decided not to revise the guidance–and then reversed itself after enormous pushback. The process of appointing the new committee took place under enormous public scrutiny. The committee ended up including both people who believe in proper science and CBT/GET ideologues, so predicting the outcome is a challenge.
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As a reminder: Earlier this year, Daniels and colleagues published a study that purported to prove the effectiveness of a specialized form of CBT for CFS/ME patients with “co-morbid severe health anxiety.” (I critiqued the study here.) Even though it is normal for patients to experience anxiety about a complex medical condition that clinicians tend to dismiss, the investigators posited it as an independent psychological problem that should be targeted for intervention. This study appeared designed to generate a funding stream for more research into “CBT-for-health-anxiety” as an treatment for anxious CFS/ME patients, but the argument disintegrated under scrutiny.

Now Daniels appears to have engaged in public ad]vocacy on an issue before the NICE guidance committee. According to the tweet, “we know” CBT works as a treatment for ME/CFS—that is, despite international repudiation of the PACE trial and its associated treatment paradigm. The tweet has since been deleted. Maybe Daniels realized she might have crossed a line, given her position as a NICE committee member. Oops!
 
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