NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

That reflects my findings too.

 

Lecturer in child health. Esther Crawley?

Mustn't be negative befor he begins his work.

 

I am encouraged by the CV. It seems that he is someone who takes seriously the job of independent assessor and his own research looks sensible and quite imaginative, at least at first glance. He is into physiological disorders.

 

I'm fearful of anyone who is not already a clear outsider.

 

http://www.meassociation.org.uk/2018/05/nice-draft-scoping-report-published/

NICE is holding its scoping meeting today so hopefully we have several members there including @Jonathan Edwards and @MEMarge representing this group.

The ME Association has helpfully published the timetable for the new guideline.
Looking forward to hearing what went on.

 

I think the meeting went well. There seemed little or no sign of psychiatrists there and psychiatrists did not appear on the guideline suggestions for committee members. We had an opportunity to air the relevant issues and the staff from NICE who will be involved in the guidelines seemed receptive.

 

Agreed. They knew the issues. There was surprisingly little to argue about. NICE even acknowledged that criticisms of existing studies would also be borne in mind.

 

Good.

 

Perhaps they are finally developing a sense of perspective.

 

A minor observation that intrigued me. The new chair of the guideline committee, Peter Barry, came up to Charles Shepherd and myself, who were sitting next to each other nattering. He quipped that he thought the organisers had managed to split us up. If the new chair knows who we both are, having never met me and maybe not Charles, it seems that he is doing some homework! He was being friendly and facetious.

Now that I think of it we did have a psychiatrist at our table but he was all for activity management and support. No defence of PACE or suchlike.

 

Invest in ME pointed out that the Lightning Process is mentioned in the scoping document.

 

I don't find that too reassuring - if I was a staunch PACE defender keen to get GET and CBT in NICE I think that I'd take a similar approach at a meeting like that (with a lot of engaged patients). Did they criticise PACE?

Still, fingers crossed.

 

It is, but NICE clarified that doesn't mean they'll be recommended--just that they'll be included in the evidence.

Jonathan also pointed out that narrative summaries of studies aren't suitable in this case, and they seemed to agree. They also agreed that the criticisms and discussions around certain studies also needed to be considered. Charles Shepherd said patient experiences should get a higher priority due to the poor evidence base, which was also well received.

In general, I'm feeling positive about this. They seemed to realise PACE was terrible and that they can't just rehash the same rubbish as before.

 

He brought it up, but I pointed out the flaws in the trial and that they dropped objective measures (he'd previously agreed that using actometers was a sensible idea, although it seemed like the idea had never occurred to him before, which is worrying). This seemed to put an end to that, and the NICE rep was clear that the criticisms and reanalyses would be considered.

 

Going by this they couldn't attend - http://www.investinme.org/Documents/NICE/NICE May 2018.pdf

 

There is a conspicuous disconnect between what the clinics describe and what patients say is happening in the worst cases. Perhaps they really do intend to tailor treatments for everyone, and be supportive, but over the years have started rushing things and getting defensive at patient pushback, and so more and more patients get given a cynical, prescriptive treatment as a result.

It's like there are two worlds. One the clinicians inhabit, and another patients inhabit. They seem completely different.

One of the women at our table sent her daughter to Crawley. She said Crawley started off quite good, but her paranoia and naivety got the best of her, and so now she's quite defensive and feels aggrieved that she isn't getting rewarded and celebrated for her work. As a result, her treatments have got worse too.

The psychiatrist on our table was from the Liverpool clinic. So hearing his account and comparing it to patient accounts was quite enlightening. I think there's an element of wilful ignorance going on, but they do seem relatively sympathetic to patients. The trouble is, they may not be saying what they truly believe, because they're experienced in avoiding that conflict.

It's like when I get in a taxi with a driver going on about politics, and it quickly becomes apparent he's racist and right-wing. I know instantly not to mention that my mum is a black Labour councillor. I don't mention that I'm a rabid socialist. I don't mention that I believe in a universal basic income as a solution to widespread inequality. I just nod and pray that there's no traffic. Otherwise I would have to have yet another argument about race or politics or both, and neither of us is going to change our opinion. This could be like that.

 

Good to hear you were there to raise those issues. In situations like that I always wonder if they just act ignorant. Did he make any criticism of them for dropping actimeters?

My suspicion is that there's a lot of this, and then things change when the patients are out of the way.

 

He just went quiet.

I think so too. But it doesn't matter. He was a part of the last guideline development group, so evidently part of the problem, but said he wouldn't do it again. And if he's not willing to speak out in the meetings, then it's unlikely to impact on the guidelines. If we can keep them all quiet like this until the end, we may win this thing!

 

The worry about them being quiet, is that they may feel the scoping document actually gives them sufficient scope to work towards their own ends?

Edit, But not being there, I don’t know know how the feel of the day went