The BMJ are reporting that four members of NICE’s guideline committee on ME/CFS have stood down. One is the medical advisor of the ME Association, who stated yesterday that he found it too difficult to combine membership of the committee with his wish to comment publicly in the media about ME issues.
However, the real story here — an “exclusive”, according to the BMJ — relates to the three other members who departed. According to the BMJ journo, these resignations reveal critical problems with NICE’s processes for developing treatment recommendations.
Notably, the BMJ reporter comes to this conclusion despite the fact that neither NICE nor the three members concerned have provided any explanation for the resignations. In fact, all members of the committee have signed confidentiality agreements, meaning they have undertaken not to discuss such matters with anyone, including the BMJ.
So if the BMJ know something about this that the rest of us don’t, it can only be because someone has breached confidentiality.
Surely such a thing could never happen, in any universe.
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But what strikes me most about these developments is how the BMJ have chosen to frame their story.
Straight away, it is presumed the resignations must signal “divisions within the committee over the guideline’s final content,” even though — as mentioned above — the BMJ cannot possibly be aware of the reasons for the departures.
Showing their hand a bit more, the BMJ go on to describe the draft guideline, published last November, in the following terms:
In 2007, NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a “lack of evidence for the effectiveness of these interventions.” It is unclear, however, how the evidence became unsupportive.
Note the weasly, almost sarcastic phrasing of the summarising sentence: “It is unclear, however, how the evidence became unsupportive.” Well, it might be unclear to this particular BMJ writer, but it is hardly unclear to anyone else.
Firstly, nobody is suggesting that the old evidence somehow “became” unsupportive. Quite obviously, as several years have passed since 2007, there is quite an amount of new evidence that now needs to be considered. This is how science works. Heck, this is how NICE reviews work.
What is the BMJ suggesting here? Do they believe that science cannot be updated, or that bodies like NICE just periodically set up committees to review the same (old) evidence over and over again? Presumably not.
So what exactly, then, is supposed to be “unclear” about the situation?
Secondly, it can hardly have escaped the writer’s attention that the NICE committee has published extensive accounts of exactly why it found the (new) evidence to be unsupportive. The committee posted all its conclusions and statistical findings online, materials which have been widely reported and discussed across a variety of media over the past eight months.
For a professional medical journalist covering any ME/CFS story, finding it at all “unclear” how the NICE committee arrived at its draft recommendations represents no less than a spectacular professional failing.
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But there’s more.
See how the BMJ imply that the committee’s work was influenced by outside pressures:
NICE received 4000 responses to its consultation on the update, which it said was “significantly higher” than usual, and it was forced to delay publication of the final guidance by several months, to 18 August, to consider them.
You’d be forgiven for concluding that a committee spending a greater amount of time dealing with more information was somehow a less thorough process, rather than a more fruitful one.
Also, note how this statement hints at an familiar old trope — that of the “problematic activist” — commonly used in ME/CFS debates as a way to dismiss patients as noisy ignoramuses, obsessive harassers whose bullying behaviour ruins the lives of some very kind-hearted, well-meaning doctors.
The guideline committee also had an unusually high number of patient representatives, prompting suggestions that this may have led to more weight being put on patient views than on published scientific evidence…
[Sidebar: note how the BMJ journalist again pretends that those “scientific evidence” details are somehow opaque.]
… The 21 member committee had five lay members rather than the usual two, plus another co-opted member who was a representative of the ME Association.
Quite clearly, the BMJ writer is presenting “lay” membership as a bad thing here. Which says a lot, actually.
Let’s remember that five members out of 21 hardly amounts to gerrymandering. It is not even a quarter of the group. The group as a whole produced that November draft, the one that proved so confusing to this BMJ reporter. Unfortunately, the BMJ writer provides little information about the rest of the committee membership, the majority of whom appears to have supported the conclusion that the old NICE guidance should be binned in favour of radically new recommendations.
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So then we get to the people who, for whatever reason, left the group last week:
Three clinicians resigned from the committee at the end of July, none of whom wished to comment on their reasons when approached by The BMJ. All members of NICE guidelines committees sign confidentiality clauses barring them from speaking about the workings of the committee and the content of the guideline until it is published.
The article goes on to name the three resignees. Two of them work as clinical leads for “fatigue services” in the UK; the third is a senior physiotherapist at another such service.
I find it striking that the BMJ reporter makes such a deal about three members of a 21-person committee. These three members represent an even smaller minority of the group than the five so-called “lay” members.
Perhaps to make the most of the situation, the BMJ pushes a quality-versus-quantity argument: the three who departed are basically VIPs; their views should be seen as more significant than those of the 17 other members they left behind.
To defend its postion, the BMJ then rolls out one of its own columnists:
Commenting on the three resignations, Paul Garner, a professor at Liverpool School of Tropical Medicine and director of its Centre for Evidence Sytnthesis in Global Health, said…”What is serious is that those resigning are some of the most respected service providers for ME/CFS services in the country.”
The BMJ narrative here is especially Orwellian. It claims that we should take the views of “respected service providers” more seriously than NICE’s own review of empirical evidence.
The idea that we should attach additional weight to the views of “respected service providers” is just nonsense. If we were to do that, then we would not need NICE guidelines at all. We would not even need NICE. Simpy put, the whole point of review institutions such as NICE is to provide structures for ensuring that clinical practice is guided by evidence and not by opinion.
The entire basis for the existence of NICE is our enlightened understanding that scientific evidence is superior to frontline anecdote.
In the old days, clinicians relied on their instincts, while patients were expected to put up or shut up. But these are supposed to be the new days. The fact that some “respected service providers” aren’t getting their own way is not a red flag warning us about a broken review process. It is a sign of progress. Data, not status. Evidence, not eminence.
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Out of a wish to avoid ad hominem argumentation, let us just gloss over the fact that Professor Garner — the only person quoted in the BMJ article — is himself a relevantly controversial figure, known for advocating the use of cognitive treatments for fatigue-related conditions (and for the contentious claim that he cured himself of Long COVID using the power of positive thinking).
Instead we can reflect on his interpretation of these recent developments:
“These resignations can only mean a critical breakdown in the methods for formulating the recommendations. Normally areas of disagreement are solved by formal consensus methods, voting, or informally. That is what the panel is for: to agree.”
Let’s just say that Professor Garner is not a person who is concerned about the problem of groupthink in decision-making systems. In fact, he’s all in favour of it. Formally or informally.
And note that even though he seems to feel such committees should resolve their disagreements like adults, Professor Garner is in fact defending the people who resigned here, rather than criticising them. He is standing up for the people who threw their toys out of the pram and walked.
Presumably the good professor feels that the 18 other committee members should just fall into line and agree with the views of those three “most respected” persons who resigned. After all, that is what they are for. To heck with all that evidence-reviewing palaver. Consensus is what matters.
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Sarcasm aside, it seems clear that organs like the BMJ are just structurally incapable of providing balanced reporting, at least when it comes to ME/CFS.
The BMJ itself is not a regular news-reporting organisation. It is the house journal of a professional body. Professional bodies can appear quite austere from the outside, but usually they are convoluted social entities: internally comprised of multiple networks and cliques, dominated by movers and shakers, and occasionally scandalised but rarely truly sensational. Mundane in their shortcomings. Tedious in their politics. Unwilling to acknowledge their flaws.
In other words, the same as everyone else. Human.
It is ironic that the ME/CFS dispute, at its core, is an argument about the merits of cognitive behavioural therapy. In CBT, it is often said that “you can’t control events…but you can change how you interpret and feel about them.”
It seems to me that the lingering clique who are intent on retaining CBT as a core treatment for ME/CFS are especially adept at employing this very strategy themselves. They have an uncanny knack of seeing the same facts as the rest of us — but of interpreting them in ways that advance their own cause and which boost their sense of self-worth.
In a clinical context, this would be called reframing.
In journalistic contexts, it is called bias.