UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Good stuff, @Peter Trewhitt.

Noted for future legal proceedings.

Yes.

 

Not yet, just a post on the Long Covid thread at the moment. Making a place to talk about it some more is on the moderators' 'to do' list.

Edit:New thread here: Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

 

I think the NICE policy of having guideline development groups largely consisting of self styled experts in the field is pretty disastrous. Look what happened in 2007 to ME. Look what's happened with Chronic pain and Long Covid.

Even this welcome new ME guideline is a compromise in which in order to get agreement to scrap GET and directive CBT, which are huge wins I'm grateful for, they had to allow sections on CBT for managing activity and physical exercise programs, neither of which is evidence based. In the wrong hands these will lead to ongoing harm, despite the vitally important proviso that they must be done within the pateint's energy limits. So many of us don't realise we've exceeded our limits until it's too late.

I think particularly for conditions where there is no biomarker, and where there is any disagreement over how to treat it, guideline committees should not include anyone who is involved in delivering the treatments under review, or who has been involved in the research under review.

Such people could be invited to give 'expert testimony' to the review committee, so their views are heard, but they shouldn't have a say in what is decided or even be in the room when contested areas are being discussed and able to sway the committee.

I think guideline committees in those circumstances should consist largely of clinicians with wide expertise in reviewing evidence from clinical trials of all types across a wide range of fields of medicine, and probably of carrying out such trials in another field of medicine - people like Jonathan Edwards, for example, who have clinical and research experience, but not directly related to the condition under review.

They should also include some expert patients (and carers possibly) who both have understanding of clininical trials, and can help the committee understand the condition under review and the care needs of people with the condition.

And if necessary the committees should have the capacity to commission surveys of patients, and testimony from patients, to assess harms and to assess unmet care needs.

What guideline committees should not include is a large proportion of self styled experts in a contested field, some or all of whom have professional reputations, careers, their own research, and in some cases financial interests, tied up in evidence under review and the outcome of the resulting guideline.

NICE seems to have a very limited 'conflict of interest' definition. Why are the above things I've listed not immediate reasons for exclusion from guideline committees?

 

Further overnight thoughts about the Royal Colleges' awful statement and BMJ publishing it and any replies.

I think this RC's statement and some of the same organisations' submissions to the draft consultation have revealed something rotten at the heart of British medicine, and that something is -

- a belief that exercise and positive thinking (CBT) are always helpful to health and never cause harm

- a complete lack of grasp of what post exertional malaise is and the effects of triggering it on long term health

- a belief that their clinical experience trumps clinical trial evidence

- a belief that they know which treatment is best for which patient and the have expertise that enables them to 'personalise' their advice to patients

- disdain for people with unexplained symptoms, including those with ME/CFS

- a belief that medically unexplained equals psychosomatic

- a lack of understanding that patients saying a polite thank you and going away doesn't equate to the treatment working

- a lack of curiosity about the long term effectiveness of and of harms of what their clinics do. So no follow up of patients or recording of harms.

What that all adds up to is lack of understanding of the need for sound evidence. There is far too much misplaced confidence in 'doctor knows best', and what the doctor 'knows' in this case is based largely on current fads about exercise and positive thinking.

 

Sorry, yet more incoherent ramblings. I promise this will be the last one for a while. I'll go away and watch some rubbish on TV. I'm really too exhausted to think but I seem to have built up a head of steam overnight so I need to let it blow out here.

On the subject of writing rapid responses to the Royal Colleges' statement.

I think we need to let their own words and solid evidence make the argument for us:

- a few choice quotes from the RC's submissions to the draft consultation, to show up their lack of scientific approach, prejudices and lack of understanding of ME

- a clear definition of PEM from a reputable source

- a link to some evidence about the effects of execise on PwME,

- some data from the BACME survey about what is currently being done in clinics that shows most are still doing graded activity increases,

- a link to Brian Hughes latest piece on LP,

- a link to Graham McPhee et al's research showing clinics don't follow up patients.

I think this sort of evidence is a more effective counter to the RC's statement rather than trying to out-argue them just with our own words.

 

The GRADE process and systematic review is done by a technical team not the committee but the committee provide some guidance.

 

I agree in theory the committee should have people with a deep understanding of the condition but that doesn't at present equate with those currently treating patients in clinics.

I agree that exceptional doctors like Nigel Speight have such knowledge, but it is clear that the likes of Crawley, Chalder, et al who actually run the clinics seem to have very limited understanding or even dangerous misunderstanding. That's worse than useless.

If those selecting the guideline committee can't tell the difference, we're stuffed, to put it crudely.