Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

The presence of patients in research and guideline evaluation is still largely perceived as a silly thing by most MDs, an attitude that may turn into hostility if it overturns old belief systems. As we all know, knowledge in science is immutable and cannot change. As the present opinion paper basically argues.

NICE has a model that allows it, but recent overtures to work with Cochrane instead, who don't bother with such things and are far more secretive, doesn't suggest too many good things. It's also not the norm to be this open, usually this happens in such secrecy that we only ever find out anything once it's published and face a blank wall to any questions asked.
Cochrane apparently do have some stakeholders and consumer involvement in their work.

Stakeholder Involvement in Systematic Reviews: Lessons From Cochrane’s Public Health and Health Systems Network
 
Just a thought, if anyone has a line to Peter Barry, I wonder if he could have a chat with Gillian Leng, who he probably knows, about the ongoing hosting of the Larun et al exercise therapy review? That ongoing hosting negates a lot of the good that the NICE Guidelines do, especially in countries outside the UK.
 
But anyway, back to the topic—unusually, I have got my hopes up on this one. It's unlikely to shut White et al up, but if it's done as well as I hope, it's another line in the sand.
Yeah let’s face it White and his ilk are unlikely to ever shut up. It’s about who is still listening to them. When you’re trying to get any type of change there will always be naysayers, the dinosaurs. What’s important is to minimise their influence. Having the likes of NICE and prof Barry et al being the ones to be rejecting their narrative is a huge difference to the situation 10 years ago
 
Having the likes of NICE and prof Barry et al being the ones to be rejecting their narrative is a huge difference to the situation 10 years ago

Indeed. And if it is firmly rejected, despite the fact that White et al waited to publish their article until Nice might be assumed to have its focus elsewhere because it's "done" ME, it's a useful rap on the knuckles.
 
Jonathan - "My information is that Peter Barry and co are likely to have taken this seriously and probably produced a slightly lengthier and watertight version of what we had at Round Table."
Looking at the "bigger picture", i.e. beyond the NICE ME/CFS Guideline, I think there is a case for Peter Barry to rebut White et al. Basically Peter Barry, & Ilora Finlay, produced an evidence based guideline - as per NICE's remit. If there is evidence that they e.g. should have give greater weight to then that needs to be considered; however, there was no objective evidence that these interventions work - what NICE concluded. If we're at the stage where an evidence based review can be overruled based on pressure from the medical established, then basically that needs to be publicly stated in NICEs charter.
Ironically there was evidence that the previous NICE ME/CFS Guideline was flawed. I.e. the recommendations were based on poor quality evidence and that fact was not reflected in the report. Some of the experts (from Sheffield University?), employed by NICE to review the evidence, had previously published a review indicating the low quality of the evidence - yet the report they prepared for NICE didn't reflect those concerns. If White et al had something like that, then I've no doubt that Peter Barry, & Ilora Finlay, would agree that the Guideline should be reviewed/revised - they don't!

Jonathan - "It is all done and dusted as far as I can see." Yip to challenge an evidence based report you'd need to have a basis to challenge the evidence - they don't. This all seems like a long whinge --- but potentially there could benefits both for NICE & the wider community -- like long covid, ---.
 
And Crawley, unless I'm mistaken. Even though she is still doing the same things.

But given her work with Ladhani on CloCK, who was an author of a recent analysis trying to downplay Long Covid as non-existent, it's not really any different. But her absence here is still notable.

I really wondered about that.

I don't remember seeing Esther Crawley adding her name to any of these general BPS articles. She puts her name to specific research papers done by her colleagues at Bristol/Bath on therapies for ME/CFS, but she's also a community pediatrician and professor, so covers all childhood illness. Unlike White et al, her career isn't built on or dependent on psychobehavioural models and therapies.
 
They are impervious to humiliation and embarassment, however, given their arrogance and incomprehensible certainty about their own righteousness.

That may well true.However, to continue the metaphors, a range of people here have nailed their colours to a particular mast when they need not have. And in doing so they are tarring themselves with one brush. So for those who find Peter Barry's response convincing they have labelled themselves as numbskulls.
 
I'm sure anyone would get annoyed if they had to argue the same point over and over again to people with their fingers in their ears.
It is now quite clear that their strategy is to simply keep forcing us to endlessly re-litigate their bogus claims, knowing full well how limited our capacity is to keep doing it. Along with smearing us at every opportunity along the way.
 
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