BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

@adambeyoncelowe can we get NICE to make a statement about whether or not they were pressured by patients?

With the final guidelines approaching, we could be hearing the "patients pressured NICE" line more often.

We must not allow the depiction of patient involvement as undue pressure.

 

It would be of no evidential value. They could hardly say that they were. Anyone making such a claim should show their corroborative evidence. The fact that NICE came to conclusions which some interested parties do not like is not evidence of pressure by one party. If the decision were now, somehow, to be reversed what would that indicate?

 

And published, https://www.bmj.com/content/371/bmj.m4774/rr-8

 

Yes. That trial is well intentioned I think, and starts off by saying ...

That is the only reference to graded exercise therapy, as a specifically named intervention implying GET, in the whole paper. But it then goes on to say ...

I get the strong feeling, as I think you have already suggested, that the authors seem unaware of "GET" as a specifically named and very specifically defined exercise regime, which at its core disregards and rejects all notions of pacing. GET and pacing are mutually exclusive, so you cannot possibly have a treatment arm of GET-with-pacing! Which clearly shows that the therapy applied in this trial was not GET, even though the introduction seems to suggest the trial's aim is to vindicate (or not) "graded exercise", which the authors clearly conflate with GET.

It seems they did a useful trial, and maybe demonstrated that pacing up to, but at least just within, a patient's sane limits could be helpful for some, and that this form of treatment - by definition - was not GET, but their own form of symptom-sensitive graded exercise. Not at all appreciating that GET, which they seemed to be aspiring to retest, is not in the least bit symptom-sensitive, but actively requires insensitivity to, and riding rough shod through, patient's symptoms. To the uninitiated the difference might seem trivial, but it is actually massively important. The difference between a pilot being sensitive to how close an aircraft is to its stalling point, and thereby remaining airborne, or insensitive to it, and stalling out of the sky; it can be a very fine difference. So many people just don't seem to "get" it.

It's extremely worrying when scientists work to reproduce the validity of a treatment that is not the treatment they actually think it to be. They do all the clever stuff, and hard work, without double checking the most elementary of their assumptions. And then others accepting at face value the validity of their findings.

 

Yes, I am quite pleased with having managed to be succinct.

The GRADE people really do seem to have put their foot in it. If it is now official that GRADE would rate the evidence from PACE as good enough to based guidelines on then maybe NICE are entitled to say no thanks to GRADE in the future. Having been told they are incompetent by the GRADE crowd might have an interesting impact on NICE's loyalty to GRADE.

 

Still worries the heck out of me though. Exactly what I tried to do for years and it's done me no favours. One could argue that maybe the damage was done before I realised about PEM though I didn't know enough to call it that.

The crux of the matter being is it possible for damage to be done without triggering symptoms? I strongly suspect it is.

Edit -spelling

 

I attempted to summarise the whole thing in fewer than 280 characters:
https://twitter.com/user/status/1365829456762458114

 

There is succinct and then there is distillation...

 

Yes. And honest reviewers would have made clear in a review to separate out any findings from this trial from any analysis of GET.

 

I've written a blog (with the help of Evelien) where I analyse the rapid response by Guyatt and colleagues.

https://mecfsskeptic.com/the-nice-guideline-committee-and-grade-methodology/

 

"His might need some further explanation.", presumably should be "This might need some further explanation."

 

Yes thanks Andy - updated it asap.

 

Thanks very much, @Michiel Tack, for explaining it in an understandable way for those of us who struggle to make sense of numbers and statistics. Your piece has made it a lot clearer.

Two tiny edits:–

Who Are the Authors?, paragraph #2: name misspelled as 'Flottrop'
Risk of Bias, paragraph #1: I think the word 'neither' is missing after 'even though'.

(Apologies if that sounds like nitpicking...proofreading is one of the few former skills I've managed to hang onto, at least some of the time!)

 

Interesting bit of CV for Dr Busse:
Dr. Busse has been active clinically in the management of disability secondary to chronic pain and other medically unexplained syndromes since 1999 and currently serves as the Clinical Director for Prisma Health Canada – a private company that manages chronic claimants (5+ years on disability) referred by private disability insurers. From 2001 to 2010 Dr. Busse was the Director of the Complex Claims Division for ATF Canada, a private company that provided assessment and treatment for patients in receipt of long-term disability benefits.

No mention of this in the competing interests. It would be interesting to know how he came to be first author this RR.

 

We never did manage to quite get the full story of someone else's association with Prisma. I think he claimed it was overstated.