Dear
@Peter Kemp,
Thanks for the detailed response.
Let me take your points in order, for simplicity. I do not understand why medical professionals advocating for patient groups should want to be anonymous. There are lots of us, including myself, Charles Shepherd, Nigel Speight, Luis Nacul, Chris Ponting, Stephen Holgate, William Weir, etc. very happy to say who we are. I agree that there is an issue for junior professionals who are also ill but those who have chosen to make themselves known, like Keith Geraghty, have actually done well out of it.
I agree that NICE staff appear well meaning and in some cases ill-informed and maybe not up to the task. NICE has certainly made a lot of mistakes in the past. But I think annoying those involved in the guideline committee may be a serious mistake. We have had lengthy discussions about this but a lot of it may have been on a private thread set up for people attending the meetings.
The current guideline re-assessment was set up specifically because people like Charles Shepherd had convinced NICE that the recommendations for CBT and GET needed reviewing. As far as I can see removal of these is the only thing that will make a material difference. NICE guidelines are not about defining diseases or 'disease recognition'. They are instructions for doctors about practical management of ill people. Since there are no specific treatments other than CBT and GET for which there is useful evidence of efficacy there is nothing else of relevance to ask for. (The service is collapsing because the NHS is collapsing but that is not going to be dealt with in this guideline.) Moreover, since the evidence for CBT and GET is no better for people without PEM there is no need to focus on PEM as a determinant of treatment other than the obvious point that it makes sense not to push exercise if you have PEM.
So, the committee is a group of people brought together with the purpose of deciding whether or not to remove CBT and GET recommendations, which most people with ME seem to want to happen. If a group of people have it in their power to do something you want you do not annoy them. It is as simple as that.
More specifically, last time I made a guess at this I reckoned that there is a 40% chance that the committee will have the guts to remove CBT and GET and 60% they will not. The crucial issue here is that if they do not the situation is much worse than not convening the committee because the decision will likely stand for ten years. We know that the committee chair Peter barry has read all the papers criticising PACE etc. and that he takes them seriously. We now that Ilona Findlay, the vice chair, is keen to keep people with vested interest out and is broadly sympathetic. But the problem is that by inertia the committee is almost certain to fill up with professionals for whom making a decision to withdraw recommendation would be very difficult personally. They might even lose their jobs, judging by the phone calls and emails that have occurred in the past.
Basically people with ME desperately need these people to be on side. They will not be NICE staff. They will be professionals and lay people elected to the committee. To annoy them seems to me to be very foolish. I realise that comments at this stage are being fed back to NICE administration and may not get anywhere near some of the committee. However, I doubt it is as black and white as that. The person who is most needed to be on side is Peter Barry and he is already very much involved. If Barry sees the patient stakeholders as intelligent people with all the detailed arguments at their fingertips, prepared to treat him with respect and argue entirely reasonably he may well be swayed into saying to his committee that they should bite the bullet and do the right thing. If he sees a muddle of arguments about one disease being more important than another and wanting to have all sorts of unproven treatments available then the path of least resistance may appear attractive.
I have sat on committees like this - particularly ethics committees. I can picture the body language as people take positions on a sensitive point. I had considered applying to be on it but have reasons not to. Somebody will have to pipe up and say 'let's face it, the patients have got this exactly right, their arguments are cool, rational, detailed, but focused, the evidence is not there and we should stick to the principle that where there is no reliable evidence there is no recommendation'. And when someone else pipes up with 'but what are we going to have for treatment if we do not have CBT and GET' there have to be enough people who are not annoyed with the patients to swing the vote.
