black trash bin with full of trash

The cries for help are getting louder. And that’s a good sign

Earlier this year, I wrote about a draft academic paper that had attempted to condemn the new NICE guideline for ME/CFS. As regular readers might recall, the paper had claimed that NICE was guilty of “eight major errors” in its guideline reviewing processes. In my blog post I noted that all eight of these so-called “errors” were not errors at all. The accusations being made were misleading, factually inaccurate, fallacious, or a combination of all three.

The paper has now been published in the Journal of Neurology, Neurosurgery & Psychiatry. I have had a look at the final version to see if any major updates have been incorporated, especially given the widespread public commentary that circulated on social media regarding the earlier draft. But despite the many flaws identified at the time the initial version was leaked, as far as I can see none of them have been rectified.

There have been some minor changes in wording, mostly (it would seem) aimed at toning down the first versions’s conspicuous hostility toward NICE. For example, the first draft accused NICE of “errors,” but these misdemeanours have now been recast as “anomalies.” Similarly, where NICE was previously accused of “downplaying” the importance of fatigue, it is now accused of merely “minimising” it, suggesting less malfeasance. And in the older version, it was claimed that NICE had “failed to synthesise and GRADE trial evidence adequately,” but in the final paper NICE is portrayed as having assessed the trial evidence in a “non-standard” way, which I suppose is better than accusing the NICE reviewers of incompetence.

Nonetheless, the ingredient in this sandwich remains the same old spam as before. The so-called errors/anomalies are still, themselves, flawed. You can read my detailed explanation of why all of them are so problematic in my January blog post. But, in short, here’s a summary:

(Hey, I think I might use this paper in class next semester!)

* * *

In my blog post, I noted that the article’s author list was striking in both quantity and quality. Firstly, there were quite a lot of names on the byline — fifty-one of them, in fact. Rather implausibly, the published article states that one (and only one) of the authors “drafted the manuscript”, but that the other fifty “contributed equally” to the paper. The words contributed and equally seem to be doing a lot of heavy lifting there. (Feel free, dear reader, to “contribute” to this blog post by, er, reading it.)

And secondly, the whole thing appeared to be a swamp of conflicts of interest. Virtually all the authors are or have been professionally involved in delivering or promoting the very therapies that they were now purporting to discuss objectively. How could they possibly remain unbiased when writing about this subject? Here’s how I viewed the immensity of the challenge back in January:

I just suspect the journal will need to set aside at least a couple of pages for the hefty conflicts-of-interest declaration that will be required in this case.

Now that the final version has been published, we can more accurately calculate the severity of the problem. The full statement of ‘Competing Interests’ is indeed extensive, spread across two pages and running to over 1,500 words. It is easily the longest I have ever seen. For scale, we can note that main text of the actual paper is just 3,500 words.

I have never before seen a scholarly paper where the authors’ disclaimers account for almost a third of what they have to say.

As anticipated, the ‘Competing Interests’ statement lays bare the biases at play in the paper. These authors are not neutral commentators. As they have been forced to declare, they in fact comprise a coterie of clinicians with professionally vested interests. Some offer therapies that have now been delisted, others have produced research that has now been debunked, and many have served as consultants for organisations that now stand to lose status, reputation, and — in some cases — hard cash because of the changes NICE made to its ME/CFS guidance.

No wonder these folks are out in force against the new recommendations — they are increasingly desperate.

* * *

Journalist Rachel Hall has written a piece in The Guardian about the paper that has itself now attracted a lot of attention on social media. Unfortunately, Hall does not mention the authors’ extensive conflicts of interests. Instead, the authors are described as “experts” (most likely because they used that term to describe themselves). But in my view, the journalist is just doing their job. They had little scope but to interview the people whose names were mentioned in the press release that they were given.

And so, once again, we end up with the usual suspects producing the same old misdirections and non sequiturs.

For example, one of them is quoted as complaining that

Nice has not followed international standards for guideline development, which has led to guidance that could harm rather than help patients.

This is non-factual on at least two levels — NICE did follow standards for guideline development, and the new guidance will prevent harm rather than cause it — but here the claim is just blithely stated as though it were true.

Another of the panjandrums said this:

This could have a devastating impact on people’s lives in that they will no longer be able to access the treatment that could help them the most.

Again this statement is nonsensical. It is premised on an assumption that the now abandoned treatment approaches actually work. It ignores the fact that NICE has published hundreds of pages where it evaluated the relevant evidence, concluding that the therapies in question were either useless or dangerous.

(But then according to the ‘Competing Interests’ statement, the person who made that statement

was co-investigator of several trials of behavioural interventions for CFS/ME, including the PACE trial, has received royalties for several books and book chapters on CFS/ME and received payments for workshops on CBT for CFS/ME

so I guess they would continue to claim that the therapies are actually helpful despite evidence to the contrary, wouldn’t they?)

The person is also reported to have said this:

The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions.

But this is another non-fact: the interventions being referred to are not “evidence-based”. The term is mere word play, the claim blatantly untrue. To keep repeating this false assertion reveals a breathtaking level of self-delusion, most likely rooted in runaway cognitive dissonance. Either that, or it reflects a casual willingness to engage in clinical gaslighting.

Or maybe they just misspoke. I know. It happens.

* * *

It is gratifying to see that The Guardian journalist did not just leave things at the press release. They asked NICE to comment too, consistent with appropriate journalistic practice. In my view, this alone is promising: it suggests an awareness of the risks of misinformation, and achieves better balance than that seen in many previous newspaper pieces on ME/CFS.

NICE’s reply was refreshingly strident. Hall appears to have quoted it in full:

We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.

In other words, NICE is not for turning. And why should it be? Ultimately, NICE is the authority here. Its official guidelines are of pre-eminent status in Britain’s health services, internationally recognised as deriving credibility from meticulously conducted processes of independent evaluation.

The JNNP article is little more than a self-serving letter to a friendly editor, infused with special pleading and groupthink. It has no standing other than as a work of academic contrarianship.

It is a cry for help.

Please, nobody help them.

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