Trial By Error: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline

By David Tuller, DrPH

Two months ago, the UK’s National Institute for Health and Care Excellence (NICE) abruptly delayed publication of its new ME/CFS clinical guideline under fierce objections from the GET/CBT ideological brigades and their minions. Today (Monday, October 18th), the agency hosted a meeting to allow these powerful dissenters from some of the British medical associations grandly known as “royal colleges” to present their case, however stupid and unwarranted that case might be.

These esteemed parties apparently found it inconceivable and unacceptable that the main evidence for their purportedly “evidence-based” interventions was dismissed by NICE as being of “very low” or, in some cases, merely of “low” quality–an assessment reflected in the guideline’s rejection of the long-standing standard-of-care. Some GET/CBT brigadiers accused the guideline development committee of being over-influenced by irrational patients, even though only five patient representatives sat on the 21-person body. Some news organizations, even at this late date, accepted this sort of nonsense as legitimate scientific argumentation.

Professor Michael Sharpe, eminent PACE author and one-time Trial By Error commenter (!!!), publicly projected confidence that the delay would lead to a reconsideration of the evidence. It is of course understandable that Professor Sharpe has remained firm in his conviction that the evidence from PACE was not of appallingly poor quality–in other words, that the trial was not the piece of crap I have always called it. I empathize with his need to protect his ego, but not with his doing so at the expense of logic and patients’ well-being.  

For patients, the last two months have been hellish. This community has been badly served by the medical establishment for decades. It should not be surprising that the NICE delay struck many as a continuation of that abuse. The unexpected decision furthered a widespread conviction that the guideline would never be published in the form endorsed by the guideline committee.

And the events alarmed others not explicitly covered by the guideline. A host of organizations representing Long Covid patients recently weighed in, sending NICE an open letter that noted the overlaps between the two illnesses and urged immediate publication of the guideline. (The letter expressed agreement with the similar appeal I organized and sent to NICE last month, which was signed by more than 150 experts and 120 patient groups.)

The Monday meeting was attended not just by those representing the dissatisfied parties but also by representatives from patient and advocacy organizations. It was conducted under a widely known framework called the Chatham House Rule, under which “participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed.” Given that, the public reports later Monday from some meeting participants have been limited but positive.

Extremely positive, in fact.

Assuming these early reports are borne out by swift publication of the version of the guideline endorsed by the NICE committee, today will prove to be a tipping point in this debate, with long-term implications for the future. More on that another time. For now, suffice it to say that Professor Sharpe and his main PACE colleagues, Professors Peter White and Trudie Chalder, are unlikely to be pleased by the reports from today’s event.

So, who said what?

Janet Sylvester, who represented #MEAction UK, tweeted this:

“I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic for a swift decision from NICE to publish the guideline.”

Here’s part of what Dr Charles Shepherd, who participated in his capacity as medical director of the ME Association, wrote in a Facebook post:

“What I can say is that it was a well managed and constructive meeting which covered all the objections from the Royal Colleges and I hope that this will now lead to publication and implementation of the new guideline…I assume that NICE will produce some sort of statement on the next steps forward fairly shortly.”

Jonathan Edwards, emeritus professor of medicine at University College London, provide a bit more information in several posts on the Science For ME forum:

“The meeting went much better than most people expected.”

“There were no substantive objections that were not handled simply and effectively by Peter Barry and Ilora Finlay [the guideline committee chair and vice chair], at least as it appeared to me…

There appeared to be an overwhelming majority view that the term GET should go. It was described as toxic. Similarly for ‘curative’ CBT…There was also complete agreement that GET should not continue under some other name. The inappropriateness of GET as defined in PACE was agreed by all.”

“I think it [the meeting] may have achieved exactly what its purpose was…to make people all stop and think what it is they are really arguing about and see what matters to the patients. More than one person present made strong comments about the importance of listening to patients – and not just for the sake of saying it.”

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