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

The answer to my question seems to be yes.

From Developing NICE guidelines: the manual

 

Dr Weir totally supports the biomedical aspects of ME.

 

So what will the community response be now? Is the William weir posting at the very end sweetener/concession enough? Are we still going to send a letter, are we going to accept the make-up of the panel.

 

There are still 3 appointments to be made.

 

As the cat is out of the bag, so to speak, and despite the lack of promised communication from NICE, we decided to post the statement today:

https://www.meassociation.org.uk/20...-and-committee-appointments-09-november-2018/

Dr Shepherd has accepted the appointment as co-opted member of the guideline committee.

 

I don't think so.

 

No.

So would Shepherd have been instead of Chris Burton or Mike Beadsworth?

 

No. I have a lot of mixed about this so I’m just putting up various thoughts, not opinion. There obviously has been a lot of behind the scenes stuff and still is if Dr Shepherd is making personal recommendations. I’m assuming there will be no comment from mea on the other members now.
It might be very good to do what Dr s has done, it might be considered great they are allowing expert charity involvement or it might make no difference if he can’t vote or it might be an establishment way of controlling the response of a major, historically NICE critical charity. With him and Dr Weir there is more” balance” but it is right to have the others on the panel at all with the inevitable compromise and continuation of a broad, diverse approach. Ultimately are we to view the whole process much more positively now than with the original list put up and just let them get on with the next phase as suggested
There’s also the point of Dr S and Dr W can be members after all, I can’t see why Dr Worthley, Speight or chaudhuri (neurologist) couldn’t.

 

I respect Dr. Shepherds decision and understand it was a difficult dilemma, but I think I would have preferred him to become a full member of the committee. We need the votes.

Edit: Stewarts insightful remarks made me change my mind (see posts below).

Edit: Charles Shepherds own comments made me doubt my opinion again (see later posts). Apologies for the confusion.

 

Some handy NICE definitions included at the end of the MEA statement

Co-Opted Members

Expert Witnesses

 

Is this the first 'official' confirmation of Jo's involvement?

 

I agree with you - but from Dr Shepherd's statement it appears that he felt that as a full member he might still need to recuse himself from some of the key discussions and votes. So even as a full member he might not have been able to influence the outcome in some of the most important areas.

My question is this - if Charles is a co-opted member, does that mean there's another 'Physician with an interest in ME/CFS' still to be announced as a full member of the committee?

 

I think this refers to William Weir. Shepherds dilemma was probably the reason why NICE was not sure if there were going to be 1 or 2 extra Physicians with an interest in ME/CFS

 

Good point. He writes: "as a full committee member, I might also have to remove myself from discussions and decisions in areas where I obviously have a very strong opinion." I think this indicates he would have no voting rights regarding GET/CBT, because he allready published strong opinions about this.

Not 100% sure about it, but if this is indeed the case, then it would be good news. It could indicate that other members of the committee such as Murphy will also have no voting rights on these matters.

In that case, Shepherd probably made the right decision.

Edit: I think I might have made a mistake here, see later posts

 

Absolutely, he should have taken the vote in my view, given what we are up against.

 

But wouldn't the restricted voting rights apply equally to Dr. Weir as a private doctor?

edit: cross posted with @large donner.