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

I've updated the original post in this thread to reflect the new appointments. I'm fairly sure that the vacant positions were listed on the committee member list, which now doesn't show any outstanding positions. Perhaps NICE are now happy with their efforts to stack the deck?

 

I think people have to appreciate the need for due process. Whether or not a view on the evidence is biased or unsubstantiated is something for the committee to decide. The people appointing the committee cannot prejudge. It may be that the system cannot deliver what it needs to deliver. But if due process gives way to lobbying, from whoever, then the system crashes completely. Some people may not have been selected because they expressed a 'preformed view'. Most of the professionals involved in ME care will not have done that - they had no need to.

 

I would certainly consider it likely that there has a lashing of purely bureaucratic incompetence in it.

When I was at the stakeholder meeting I had conversations with NICE and RCP's staff who seemed either unwilling or unable to grasp the politics and the history of the disease.

We were actively discouraged by Prof Baker from talking about the "past" and this essentially stopped the discussion we needed on how to stop the same disaster happening again.

We were told by Dr O'Flynn that the process had changed and the same mistakes would not happen. We made it clear on all the tables I think, how important it was to get the GDG members right. They assured it that they had taken our comments on board.

There was no clear method outlined at the 2 meetings for how stakeholder concerns would be met in the selection process and how transparent it would be. They dropped the ball obviously. The staff I spoke to seemed to lack the initiative or even want to consider that the flaws from earlier processes would come across. That was a problem to me at the time.

 

Doesn't that mean that the committee will be judging itself? If the committee is loaded with BPS proponents, what's to stop them forcing a decision that they're unbiased?

 

That is covered in the instructions. People are not allowed to 'force a decision' in relation to their special interests. But the system is basically one of self-monitoring, yes.

 

At least with our lobbying it will be out in the open, unlike the lobbying that has no doubt taken place behind the scenes in order to get so many BPSers shoe horned onto the committee.

I'm genuinely confused by this that you say

are you saying that the professional involved in ME care are assumed to not have a 'preformed view', or that they are assumed to have a certain 'preformed view', with the implication that their view is deemed acceptable?

 

The people appointing the committee need to judge the applicants to the committee - how else do they decided who to choose? It seems that the people appointing this committee decided that the way ME/CFS patients are treated should be decided upon by those who have a clear self-interest in promoting quackery and ignoring the harm done to patients.

IMO the system crashing completely is probably the best we can hope for here.

 

It is better that I do not discuss this further.

 

I understand the need for due process, but if due process produces a weird result it suggests that the process failed. In that case, don't people have the right to lodge a complaint? Need that be considered 'lobbying'?

I'm not sure what you mean here. @Alena Lerari, a PWME who applied to the committee, said earlier on this thread, 'I was told during the interview that my views on GET and CBT would be seen as a conflict of interest.' We don't know if that's why she didn't get a place on the committee but it certainly raises the question.

Are you saying that the professionals involved in ME care who use CBT/GET didn't have to express their view on CBT/GET because it would be assumed that they had a conflict and so they didn't have to declare it?

 

But how can that be avoided, if such people are in the majority on the committee? What's to stop a BPS majority saying that PACE and its ilk are things of beauty and that the NICE recommendations for CBT and GET should stand and forcing that decision through?

 

I understand that your hands are tied and that you may know things that put another complexion on this but from where we're standing, it's looking as though the committee is being loaded with some people with very strong pro-CBT/GET viewpoints. If they're in a strong majority, I don't see why we're not doomed. So maybe I don't understand how these committees reach their decisions.

I'm not asking you to give away secrets but can you or anyone else tell us what safeguards exist in such committees to stop mob rule and allow good science to win out?

If there are no such safeguards it's hard to see why patients shouldn't now seriously consider taking action.

I'd still like a summary of the numbers of how many people so far on the committee have a strong pro-CBT/GET stance. I can't judge whether the BPS proponents are already in a majority.

 

My interpretation, which may well be wrong, is that as long as you keep your views to yourself in the interview you're assumed not to have any. The interview isn't going to look you up to see what you've said or done previously.

 

Can anyone explain exactly how this is going to happen. Is it a straight forward invite 13 or 15 or so people onto a committee and each person gets to vote whether or not to change the guidelines or not?

Will each person get to present evidence for and against? What other evidence will be considered? Who will evaluate the evidence?

When someone presents their own study as evidence who is going to evaluate the strength of the claims made or potential bias etc?

HOW can NICE possibly not understand that if there is enough concern to warrant this review the potential of bias by inviting people who may potentially have no incentive to critique their own work instead of promoting it to maintain the status quo and not change the guidelines?

 

If that's so then I see a strong case for people supplying that missing information.

 

Sorry not replied yet to question to me up thread few days back from Andy. Pain bad, typing hard, briefly:

12 professionals on list now.

Don’t know opinions of Chair and Vice Chair. Apart from Crouch (social worker) and Nacal who are biomedical supporters, I would say 6 definite bps, 1 v possibly, 1 possibly. Panel heavily weighted in bps proponents favour.

Edited to add: Anbu was my v possibly, further reading on here he sounds bps, so I make that 7 definite bps.

 

One way of interpreting this is that only non-professionals are capable of having a preformed view. The possibility that a professional could have a preformed view is discounted by virtue of the fact that they are a professional. That kind of stacks the deck. I may well be misinterpreting this, but I've seen the myth of the "professional" and the characteristics that are ascribed to them in the legal profession, and what a complete farce that is.

So BPS proponents are responsible to self-monitor that they do not force a decision in relation to their special interests? I'll spare everyone the rant and the swearing.

 

The RCP manual says that someone can be asked to refrain from evaluating a particular section if there is a COI or if they have fixed known professional views. However, that would take the Chair being willing to police this.

In the last guideline evaluation (from reading the minutes) there was no sign of this ever happening. The BPS members ran rings around the patients who didn't speak up until it was far too late. They didn't seem to be confident enough to complain or else they simply didn't know what they could complain about.

In that last Guideline evaluation they split into subgroups and there was no sign of anyone with a vested interest being asked to not participate.

There is no reason why a BPS member of the GDG introducing their own evidence (i.e. from a stable-mate or something they support) and essentially flooding the evaluation time if it suits them.

If the Chair has gone along with these people being included in the group (and I thought he was on the committee) then i have no faith in him keeping them inline.

 

Much of Action for ME’s comment on committee makeup is a whitewash to me:

“Committee appointments

NICE has made two rounds of announcements regarding appointments to the guideline committee, chaired by Dr Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester.

The ability of individual members to acknowledge their own bias, and critically evaluate the evidence presented to them – especially patient experience – will be essential.

We are particularly encouraged to see the appointment of five lay members – that is, people with lived experience of M.E. or “experts by experience,” as the committee’s Vice Chair, Baroness Illora Finlay, has suggested they be called. Usually, guideline committees have two lay members at the most.

The remaining professionals bring a range of clinical and research experience to the table. We are particularly pleased to see the inclusion of Dr Luis Nacul, part of the UK’s M.E./CFS biobank team – you can watch a recording of his presentation on this essential biomedical research resource from last month’s UK CFS/M.E. Research Collaborative conference.”

 

There is very little info given on the webpage and it has a decidedly positive spin which does not seem to relate to comments folliwing on this thread. I have requested that they list the committee members on twitter.

 

The main question I had still remains:

Who gets to decide on the whether the NICE guidelines changes or stays? Is it this appointed committee or is this committee just here to evaluate evidence for others within NICE to decide?

What is the full defined motion being decided/voted on?