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

@adambeyoncelowe @Keela Too I think it would be good to also demand that patients be properly informed about the real benefits of CBT/GET (in case we fail to have them removed). I believe that there is strong evidence that CBT/GET do not lead to higher fitness or activity levels. I suspect that these therapies are widely presented to patients as a way to achieve higher fitness and activity levels, when in reality the evidence suggests the opposite (or at least no meaningful improvement). I believe many patients and doctors would decline CBT/GET if they were fully informed about these limitations.

 

I should probably be cautious about commenting on the situation and what will happen. However, at least to some degree I think the way things have been set up is realistic. We should expect professionals to make the decision, since they are supposed to be well-informed. I see no very good reason for having quite so many representatives of the professions allied to medicine but that is the way things are done these days. An effort has clearly been made to include people with a range of views but the reality is that the vast majority of professionals with experience in ME are likely to follow the current guidelines. So a complement as balanced as this is probably a sign of significant commitment to the patient perspective.

My impression is that the chair and vice-chair are genuinely wanting to follow the evidence.

I am expecting to be giving my view and I see no reason why that should not be fully public.

It seems to me that the committee is not going to miss out on consideration of the key evidence. Sound argument should prevail. If it does not, that will be transparent.

 

I agree that this is imperative. Patients need to be informed of the weight of evidence for safety and efficacy.

 

Will the meetings be recorded in audio, video, or transcripts?

 

Here's a little project for a volunteer: collect evidence of how CBT/GET is presented to patients in the real world (what patients are told they can expect, how effective it is, how safe). Then compare this information with the literature.

 

Dr William weir is also applying. He probably sees more bed bound and housebound patients than most, and knows his stuff

 

see this thread for examples of NHS CFS services:
https://www.s4me.info/threads/me-cfs-services-in-the-uk.5625/#post-118413

 

you might want to take a look at this thread:
https://www.s4me.info/threads/a-lis...p-but-who-were-not-accepted.6449/#post-117312

 

The argument may be obvious to the chair in theory but that doesn't mean it will prevail. It comes down to one thing, if the BPS crowd have a majority of one on the committee they will ignore the argument.

Transparent to who though?

Will it be transparent to GPs, nurses, hospitals, benefits agencies, Health Insurers, the updated written guidelines, neurologists who deny tests, psychiatrists who section people, the Lancet, Cognitive Behavioural Therapists, LP practitioners, new patients, The BMJ, the DSM, The Guardian, the SMC.....?

 

I am not convinced that ignoring arguments will be quite as easy as it may have been in other situations. I don't know, but any decision has to be justified.

My hope is to make what I consider the important arguments transparent to everyone. That does not necessarily mean that they will take notice, but at least it should be transparent.

 

We don't even know if the other lay members haven't, "been cured by LP".

There's even nothing to stop them being LP practitioners for example is there? It seems very strange that we don't know who they are as most advocates would be known via the forums and would probably name themselves too online as being accepted to the committee if they were well informed critical thinkers.

We have to be careful they are not just using a few patients to claim patient support for a new set of worse or the same guidelines.

It wouldn't surprise me in the least if Colin Barton was one of them.

 

Isn't it a bit weird that we know so little about these 3 lay members? I thought NICE is supposed to pick persons who have been involved in patient organization, advocacy and policy around ME/CFS. Is there really nobody on the S4ME forum who has heard of them or something that might have done/accomplished in this area?

I think almost all patient organization have expressed critique or concern regarding GET/CBT, so if the lay members really are representative, than at least 4/5 should hold this opinion.

 

Good idea. There is a huge disconnect between what they say and... what they also say. Psychosocial proponents equivocate a lot, like Sharpe arguing that CBT/GET may only be slightly beneficial to some while at the same is fully curative to all. They are highly inconsistent about what they say.

A common framing from the researchers is that they only do the basic research and are not responsible for how it is used, which of course is highly irresponsible. But there is extensive evidence that the way it is used is precisely to deny medical care and gaslight patients.

FINE was a doozy on this.

 

There are loads of good and informed patients that people will have never heard the names of. I don't know the other lay members on the committee, but that doesn't surprise me. Also, I do think that there's some reason to be careful about the right to privacy of those who did volunteer. The problems with the professional members means that we have good reason to be concerned about every part of this process, but I still think it's worth treading very gently here. I think I'd feel much less comfortable criticising any lay members than the pros, even if there was a record of them doing/saying really unreasonable things.

 

Is it possible that the lay members are known under a different internet name? Once appointed they ,say decide to take a low profile?

 

Did not someone say that one was a 19 year old patient? Cannot remember where I read this.

 

There is some info about one of the lay members (unless it's a different person) which was published on the internet with apparent intent to be read by a wider public, so it should be OK to talk about it here. Nicola Kidby appears to be the parent of a child with Down's syndrome and hypermobility, and has volunteered for Healthwatch Central Bedfordshire. I have not found any connection to ME/CFS. If she is that lay member, then the connection is presumably the hypermobility.

 

Hmm. There is usually significant missing data but little effort to explore the reasons for this.
I suspect researchers understand why this may be, yet little is done to follow it up.
Perhaps worth highlighting too.

 

Yes. I agree. My comment was not intended as a call to go search for (personal) information, more like a question if anyone is familiar with (public) advocacy work of these committee members. Maybe some of them were involved in UK advocacy many years ago?

I'm not questioning that they are well informed or anything, it's just remarkable that these 3 lay members seem to be not very well known within the patient community.
I thought NICE would select some well-known patient advocates who've been actively involved in either patient organizations or raising public awareness.