NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Could you give more information about this? Are they going to announce the last committee members or expert witnesses? Can you say where this information comes from?

Many thanks in advance.

 

Stakeholders will I understand be contacted tomorrow with news about additional appointments. I don't know what the content of the email will comprise entirely and can't say more at the moment. But the ME Association will be issuing a statement tomorrow when stakeholders have their emails.

 

I see Greg Crowhurst has announced on Twitter his appointment as expert witness for severe/very severe people with M.E. Another good call I think.

 

https://me-pedia.org/wiki/Greg_Crowhurst

 

The more good expert witnesses the better, but at the end of the day it's the people with power/votes that really matter imo. Those appointed to the committee illustrate the sort of people that NICE think should have power over how we're treated.

 

I am stunned at that... great news

 

The expert witnesses (so far) are positive. First concern I have is if there will be more - there are some bad "experts" out there too. Second concern is as Esther points out, the committee themselves can just sit through it all, nod, and then ignore it to protect their interests and personal beliefs. I suppose it would show them up to be unscientific if they did that but I just want a NICE guideline that dumps all the dangerous and unscientific crap.

 

Exactly this. NICE can appoint as many expert witnesses which we approve of as they like but, given the majority of the committee are from the BPS side of things, all I can see is that this is window dressing, to try to appease the patients. I see no need to hold back on any letter writing.

 

Yes, I would be very happy to have White, Sharpe, Chalder, Wessely and Crawley called as witnesses if we had Edwards, Crowhurst, Speight, Shepherd, Nacul and others we could trust on the committee asking questions and making the judgements. But we seem to have almost the complete opposite. I hope I’m wrong but I feel this is shaping up like a show trial.

 

I agree. No matter who's been selected as expert witness,I allready know what Murphy, Daniels, Burton, Bond-Kendall etc. are going to push for in the guideline and it's not going to be pretty.

What we need is the last committee appointments to be much better than the previous ones.

 

I’m whistling in the dark a bit here, but is there not a process that can be applied for if a decision making committee ignores the evidence presented to it and makes a nonsensical decision? In the recesses of my mind something is stirring but maybe I made it up.

 

That's how any reasonable person would expect it to work but how did it happen the last time? The committee composition was worse but there were still competent people involved, Hooper's submitted statement was solid and reflected on all of those issues, and the evidence that the review process was a sham was still ignored. Ultimately it's about the balance of opinion, which strongly leans towards magical thinking and some seemingly weird quest to make psychosomatic medicine great again.

Of course a lot has changed since then, so much research and new evidence, but they had no issues completely ignoring them in 2007. It's one of those things that should not happen but when they control the process, who's going to make them accountable?

Transparency is surely our best asset here, making all of the proceedings as visible as possible and making lapses in professional judgment obvious.

 

I don’t think that will be enough. This all feels very stage managed. They appear to be trying to make it looks as though they are listening to our concerns by appointing extra patients to the commitee, inviting non-BPS witnesses, and then (trying to appear to be bending over backwards to listen to patients) appointing an extra two committee members, who I assume will be non-BPS, but all the while making sure that BPS advocates have a majority among those making the decisions.

All very Wesselian.

 

From my limited understanding of the 2007 review, this is what happened, strong objections were submitted with supporting evidence. They still went ahead. And since it worked last time and again in 2017, it's hard to see them feeling shame in bullying the process once again and ignoring all the evidence that goes against their beliefs.

A big difference is definitely how better organized we are on social media and here. The truth was always our asset but now we actually have a voice that leaves a public record. The UK media will ignore it because the SMC will pressure them, but incompetence has to be highlighted and broadcast as it happens.

 

All that more important to voice objection to this corruption of the process while working within its parameters.

Patient concerns are not part of the process yet, despite them being the very reason why it is happening again. A public record of those objections will matter in the long run. The truth is always more consistent than bullshit.

 

From the committee appointments that've been made public so far, the BPS advocates *don't* have a majority. They've got eight positions out of 17 - that's under half of the committee (just). That's why the last few appointments are so important - and why NICE deciding to appoint an extra two committee members could be crucial in ensuring the BPS contingent aren't in a position to drive through their views (depending of course on who NICE appoint...).

 

Do lay members have the same voting rights as other committee members? Do we know if all the lay members are non-BPS? (I only know Adam and Sally.) And are we confident that the chair and vice-chair are at least neutral on BPS issues?

I really hope I’m wrong but in the past I’ve tended to be over optimistic and then been left feeling very disappointed, so I’m opting for full-on pessimistic cynicism this time in the hope that I will be pleasantly surprised.

[edit – crossed with @Trish]

 

I agree we shouldn’t assume the unknown lay members won’t be pro BPS.
Isn’t it likely people like Esther Crawley will also be an expert witness . I’m looking forward to the final lists so we can make proper decisions as patients. I’m also curious as to what has actually gone on behind the scenes and with who. I’m interested in the charities ultimate response . I’m anticipating a mixed response.
I personally think someone like Chris burton has no place in our guideline committee unless you want to accommodate a behavioral approach to vague fatigue voice which I thought we wanted to move away from, his presence suggests to me plans to keep the CFS umbrella as broad a catch all as ever.

I hope NICE appreciate that the difficulty in finding an nhs dr with a biomedical view and approach reflects the awfulness of the UK CFS system for patients and research . They need to be part of the solution