NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Also, if the previous evidence for GET/CBT was so convincing, why was the PACE study with government funding needed to provide an unequivocal answer to question of the usefulness of GET/CBT (and why did it it take so long for people to realise that PACE provided unequivocal evidence that GET/CBT did not work)?

If its academic proponents, NICE and the government believed they had unequivocal evidence supporting GET/CBT why do the PACE study?

 

Referring back to the apparetly discrepant evidence reviews by the York Centre, we should perhaps consider the question, is there any possible way in which these discrepancies could arise legitimately and honestly? It might , just about be possible to find justification if the starting position was openly admitted in the second review, and the evidence which led to the caveats being withdrawn was discussed. Failing that I can't see how it could be done. Even if it were done , it would be difficult to agree with the conclusion.

Reviews of evidence are no use if the people doing the reviewing cannot be trusted to do the job right- no matter how many papers you review.

We seem to have fallen prey to many academic and ethical failures.

 

Another thought - which someone may already have noted:
In 2001/2 it would have been convenient for the assessment of the evidence to be promising but marred by methodological flaws. That would provide the perfect justification for the embryonic PACE. By 2007 the caveats would be an inconvenience.

I have never thought that there was much point in groups like York doing reviews on things they did not know anything much about. I did a Cochrane review with someone at that time based in the York unit but they had extensive practical clinical experience of the relevant field. Unfortunately, I suspect a lot of reviews are done by people without that experience.

 

Moved post

I haven't been following this thread, so maybe this has been said: I wouldn't be surprised if we see a press briefing from the Science Media Centre on these guidelines next week, with quotes from the usual suspects or people with similar views.

 

That's really a question that needs to be answered. If this worked, why do hundreds more small trials that all amount to the same thing? How does it even make sense to spend any money on more trials if it's considered effective enough to be put into practice? It's not just what was done that is obviously wrong, but the why. And doing the "definitive" study after evidence was accepted as effective beyond any reasonable doubt, but then continuing to do even more after? Nothing normal about this.

There are exceptions to this, the Covid vaccines are obvious ones. Because of a context of emergency, they were approved before being fully tested because it was necessary, with further testing as we go along. Here the exact opposite applies, they said the evidence was good enough then funded the same things hundreds of times over. Makes no sense and hard questions need to be asked about obvious waste of public funding.

 

Should that be rephrased:we would be surprised if we do not see a press briefing from the Science Media Centre on these guidelines next week, with quotes from the usual suspects or people with similar views.

 

They will already have prepared the ground. Do the SMC get prior access, subject to embargo? Or will we be able to see who has broken the terms?

 

wouldn't it be good if someone of the best critics of the usual suspects had access to the SMC briefings?

 

The sweet irony is that the more these folk malign NICE and its guideline process, the more they confirm to NICE and others what people have been saying for years about them, but not believed. Assuming (and hoping very sincerely!) that the final guideline is at least as good as the draft, preferably with some improvements, then pretty much anything SMC might say on the subject would confirm their extreme prejudice for all to see. Interesting I think.

 

yes absolutely. i think the framing of the BMJ story gave a good indication of the best available arguments at their disposal, even though the best available arguments are terrible and stupid. but those are the themes that will be highlighted.

 

embargo is for the press and so yes, the SMC will have it and I assume also journalists covering the issue with the various media outlets. I assume SMC will post something the minute the embargo ends.

 

I work in a devolved UK administration, at a junior level, on planning policy. I wouldn't like to be recommending funding a "low or very low quality" research project [unblinded and subjective outcome criteria rather than objective criteria - actimetry]. If the Minister wanted it done then the senior officials might ask for a cover letter - direction from the Minister. If the public accounts committee decide to review the Department policy re funding research then they could ask some awkward questions.

As for the disgruntled researchers - well not sure I'd care but maybe point out that Fluge and Mella used objective outcome criteria - actimetry.

I'm impressed by what you guys have achieved re the NICE Guidance - well done.

@Jonathan Edwards

 

My prediction for the inevitable SMC briefing: they can't openly go against NICE but unnamed patient-activists that may or may not exist as described are fair game. They will also want to distract from the fact that the science behind CBT/GET was consistently found to be of very poor quality.


Soon the SMC story will be something like this: somehow a very small and unrepresentative group of activists that have pressured NICE to abandon good science and a working treatment despite having no good arguments at all. These activists are so good at persuasion that 5 of them were enough to make NICE change course. They probably silenced the rest of patient community who likes CBT/GET which is why no patients are protesting.

 

Yea the decision makers aren't the Paul Garner's they're the NIHR & the Minister who funds NIHR [Secretary of State for Health and Social Care]. From memory Barrack Obama, in his autobiography, told how he threatened the Chinese & Brazilian leaders - I've got a microphone too --- so if you guys can muster a defence on social media etc.
On a policy workshop I was told that a politicians first goal is to reelected - so e.g. try to get the message across that the are 200K people with ME/CFS and a couple of researchers --- the maths are simple.

 

Maybe The Times will also have something lined up and ready to go also.

 

Yes but they will no doubt get their " story" out first. That's what people remember.

 

It would be strange for O'Neill not to follow up what he wrote with something about what happens when it comes out. But who knows? Things often depend on competing news at the time.

 

As we are in ‘the silly season’ who knows what will happen next week. With most of the political apparatus on its Summer holidays, media outlets are on the look out for the weird and wonderful or the unusual to fill their slots. (I noticed three alien/flying saucer stories on my Facebook feed today.) But I don’t know if this also means a lot of key reporters will be on holiday too.

It could mean that, short of news, the new guidelines are picked up enthusiastically and given more prominence than otherwise, or alternatively that, with the regular health correspondents recuperating on beaches prior to an Autumn Covid wave, this story gets missed?

Also with academic activity at a yearly low, does that mean the relevant researchers and clinicians will not be about to respond or that they will have more time free to devote to a fight?