UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

In the minutes it says:

“Paul Chrisp also thanked everyone for their time and added his key points:
• There is more agreement than disagreement.
• Work to amplify areas of agreement and aid understanding
through greater clarity or additional narrative.
• Consider a joint statement from the attendees.”

It would have been good if NICE really had got that joint statement from everyone who attended, saying they were in agreement with the guidelines, at the meeting itself. It could have stopped the royal colleges from putting out the statement that they did afterwards.
 
Other useful points in the minutes:
https://www.nice.org.uk/guidance/ng206/documents/minutes-31

Referring to how the guideline committee worked:
The recommendations were not decided on by voting, they were reached by consensus. Reaching consensus was a careful and iterative process. • The whole guideline was agreed by the committee, including the recommendations on graded exercise therapy (GET) before there were resignations.
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My bolding.

. It was explained that PEM is included as a defining symptom in the IOM criteria.
NICE clarified that therefore, some studies were downgraded for indirectness, but they were not excluded. These studies were also found to be low quality evidence for other reasons than indirectness, and a reanalysis of the studies based on a requirement of 95% of the population having PEM rather than 100% did not impact on the quality assessment.
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Peter Barry presented the committee’s approach to the recommendations on graded exercise therapy (GET) (see slide set). He clarified that the definition of GET used in the guideline is that set out in the trials, including the PACE trial.
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There was conversation about the definition of GET, how it is delivered in practice and the fact that the term GET is understood to have different meanings by different people and that it has become a highly contested term. There was agreement that personalised exercise plans have a place for people with ME/CFS that want to undertake them.
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Some attendees felt that GET, as defined in the guideline, is not what is delivered in practice. Conversely, others disagreed and reported that they still see people who have had GET, as defined in the guideline, with fixed incremental increases and this has caused significant harm in people with PEM. NICE indicated that it would consider further clarification of the definition of GET as used in the guideline, so it is clear what is, and is not, being recommended so that appropriate services are delivered.
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Jonathan Edwards said:
So four of the RC signatories were at round table and did not make a squeak about knowing the treatments worked and whatever.
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If they had done then their comments may have been minuted and the response (probably setting out that the comments made no sense) would also have been in the minutes. Possibly an FOI would have led to the disclosure of those statements ---- so best to say nothing that makes you look stupid.

I should think that some people associated with NICE will be pretty fed up with this.
Maybe next time they won't bother with a pause, just get on with it.
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Yea, presumably the unofficial (verbal) advice re the RC will be --- they lie ---- brief behind your back --- don't trust them ---
 
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Also, strangely, in the minutes of the round table, Lynne Turner-Stokes appears to have no organisational affiliation, being listed as "Rehabilitation Medicine Specialist". (I'd assume that she's involved with RCP London's Rehab Medicine JSC, but, if so, why isn't that stated?)
 
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Trish said:
I wondered about that. Maybe rehab specialists have an organisation that is a stakeholder.
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There is a rehab physician organisation, which I think L T-S is head of.
We had people from BACME and CSP and OT so it wasn't just Royal Colleges.

The annoying thing is that rehab got brought in by RCP despite rehab being pretty irrelevant to ME - just wanting a bit more business. But if the RT was designed to let people air objections it made sense. L T-S had been Goddard's 'expert' anyway and Goddard said nothing himself of note.

Edit: yes, BSRM as DRW says.
 
Kitty said:
There's real jeopardy and there's bleating. I only hear bleating so far, and from a very small number of people.

If they had any substantial arguments, they'd have leveraged them when there was still time to make a difference.
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There's what we see and there's what's happening behind the scenes. No doubt there is far more politicking happening right now. The few glimpses we see in the FOIed documents is probably the tip of the iceberg.

They really do have no arguments, but they have all the power. The only thing standing in their way is the truth and people with power don't care about inconvenient truths.
 
Michiel Tack said:
Just recording that Robert Howard tweeted on 7:45 PM · Oct 29, 2021 (my bolding)

"I’m proud that medical leaders have stood up for patients with ME/CFS and for continued access to the evidenced treatments that can help them in the face of destructive individuals and groups who wish otherwise."​
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Pardon any ignorance inherent in this reply, but who is Robert Howard? I’m still familiarizing myself with the leading lights in the BPS domain, but this name is wholly unfamiliar to me.
 
Jonathan Edwards said:
I am afraid Paul Chrisp doesn't get what this is all about.

He talks of exercise making people with ME tired and the harm of GET being that they are more tired.

He also goes on about the personalised versus fixed increment business.

If this is the top level take from NICE on its guideline it is not good.
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It's worrying.

A relation of mine knows (or used to know) Professor Sir Michael Rawlins, ex-chairman of NICE (1999-2013). It was 2007, we were talking and they told me that M.E didn't exist (they knew I'd been diagnosed and unable to work for several years by this point).
'Oh really, what makes you think that?' I responded with remarkable serenity.
'Because Michael Rawlins told me: Professor Sir Michael Rawlins. He's chairman of NICE by the way.'
'I see... and how did he come to that conclusion?' I asked meekly.
'It was his neighbour. Had a bad case of M.E for a few months but couldn't afford to be ill; he had a family to support, so pulled himself together and he's right as rain now.'
'Right... and how was this neighbour diagnosed?'
'By his doctor,' I was told by my perplexed relation.
'Okay, so no objective test to say he has the same illness as me, just subjective opinion...'

At least that made them pause for thought. I can't be sure when their conversation with Michael Rawlins took place, but remember feeling a sense of irony. I think the 2007 guidelines were on the horizon, being produced by his very institution for an illness he didn't even believe existed. I kept that thought to myself though.
 
Our main bane has never been adherence to science, or logic, or reason, or facts. Its been politics. With enough political force behind what is happening big changes are now possible.

So many advocates, me included, and so many of our researchers, have a scientific approach. This is almost antithetical to political strategy. However once the politics shifts in our favour this is exactly what we need to push further change.

Where the BPS movement has excelled is at the politics. However politics not grounded in reality always leads to major problems in time. You cannot fool everyone all the time.
 
Trish said:
I wondered about that. Maybe rehab specialists have an organisation that is a stakeholder.
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From memory which could be entirely wrong, I think I saw her ( Lynne Turner-Stokes) name associated with the Academy of Medical Royal Colleges.

eta: apologies. Just looked it up. Chair of the AMRC is Helen Stokes- Lampard. Why do they have to have such similar names?
 
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Kitty said:
This is why it's puzzling that they're making such energetic efforts to make themselves look stupid in public after the event! :laugh:
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I think that this may be missing the point.

They can only be stupid in the eyes of the public if they think that the public consists of people, and not of profit yielding livestock.

Most people don't care what livestock thinks, what it's opinion of them is.

They only care what their equals, or betters, think.

We are simply not the same species as far as they are concerned, we are something to gain resources from - livestock, at best.
 
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