House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

Excellent intervention from Baroness Finlay of Glandaff.

ETA that will be causing some thought in the relevant Department of Health policy team and whoever in NHS is responsible for liaison with them. if they are doing their job properly they will be researching what her issue about reporting harms is about. The fact that she raised these points in the Lords shows she means business.

eta2 ah just realised he had to resort to saying he would write to her so they will indeed have to come up with a credible response to her intervention
 
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ladycatlover said:
Just watched the HoL thing on Parliamentary Channel on TV.

Lord Kamell said several times that the NICE guidelines had been put off twice. I thought it was actually 4 times now - 3 differing dates and then not publishing as the 4th. I'm too knackered to double check though.

Oh, and he also referred to ME/CFS as being Myalgic Encephalomyelitis and Covid Fatigue Syndrome. Got the impression he'd be happier talking about Long Covid rather than ME/CFS. Which he didn't appear to know anything about, and he asked one of the speakers to write him and he'd reply to (I think it was) her question.

Basically it was a waste of time.
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Here's the clip.

Lord Kamell clearly had no idea what he was talking about. But pleased that Julia Cumberlege of #FirstDoNoHarm fame asked a question at the end
 
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ladycatlover said:
Just watched the HoL thing on Parliamentary Channel on TV.

Lord Kamell said several times that the NICE guidelines had been put off twice. I thought it was actually 4 times now - 3 differing dates and then not publishing as the 4th. I'm too knackered to double check though.

Oh, and he also referred to ME/CFS as being Myalgic Encephalomyelitis and Covid Fatigue Syndrome. Got the impression he'd be happier talking about Long Covid rather than ME/CFS. Which he didn't appear to know anything about, and he asked one of the speakers to write him and he'd reply to (I think it was) her question.

Basically it was a waste of time.
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disagree it was a waste of time that Minister now has ME/CFS guidelines embedded as an issue in his memory due to the mauling he got from the Baronesses
 
I did indeed think a lot of the questions were good, some very strong even. An observant watcher might have noticed that the Minister did not really answer what was asked about.

(I also found it a bit amusing, apparently the rules are that you have to start every question and answer with an elaborate set of compliments to the one you are adressing?)


Edit: word change
 
Very interesting that the vice-chair of the NICE committee, Baroness Finlay, spoke up; her question was most instructive. Firstly, the phrase "through consensus agreement in the committee" suggests that these matters were decided purely on a consensus basis and did not come down to voting; secondly, "[w]ill the Government work with commissioners to ensure that appropriate specialist services for patients with ME are developed and continue?" suggests that she has concluded that the current services are not at all appropriate; thirdly, the comment that services should "monitor accounts of harms as well as benefits" - well, that will surely ring the right kind of alarm bells in DHSC.

I wondered if either of the "disinterested" members of the committee might potentially become an ally. Once you've heard how badly people with ME are suffering for ~3 years, in the absence of psychosomatic ideological preconceptions...
 
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Nightsong said:
Very interesting that the vice-chair of the NICE committee, Baroness Finlay, spoke up; her question was most instructive. Firstly, the phrase "through consensus agreement in the committee" suggests that these matters were decided purely on a consensus basis and did not come down to voting; secondly, "[w]ill the Government work with commissioners to ensure that appropriate specialist services for patients with ME are developed and continue?" suggests that she has concluded that the current services are not at all appropriate; thirdly, the comment that services should "monitor accounts of harms as well as benefits" - well, that will surely ring the right kind of alarm bells in DHSC.

I wondered if either of the "disinterested" members of the committee might potentially become an ally. Once you've heard how badly people with ME are suffering for ~3 years, in the absence of psychosomatic ideological preconceptions...
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Agree strongly with this. I’m hoping she will pursue this.
I posted here about her intervention and the impact on DHSc https://www.s4me.info/threads/house...sday-12-october-2021.22424/page-2#post-380744
 
I did a thread on it here:


The full transcript is now here: https://hansard.parliament.uk/lords...8AE-CECB51B25D93/HealthChronicFatigueSyndrome

I did my own transcript - the key question is here:
Baroness Ritchie of Downpatrick: My lords, could the noble lord the minister indicate what were the issues that were raised during the prepublication period with the final guidelines that merited a pause on the publication?

Minister (Lord Kamall): Yes, thank you. The issue was around some of the guidelines, for example around GET, and other issues, where there was concern that some of these were going to be deleted. There were some concerns from some groups, some stakeholders, that for some patients – not all patients – for some patients clearly found them damaging, but for some patients they might actually be helpful or partly helpful, not a cure in themselves, but they might be partly helpful towards the treatment. And therefore, for that reason, it’s why NICE have asked to, have convened this roundtable to ensure that they hear from a wide range of views and hopefully we can achieve some sort of consensus, but also for different stakeholders to understand where the others are coming from, so they can try and reach some sort of agreement.
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It looks like the Hansard record has been substantially amended - compare it here:
I thank the noble Baroness for her question. The issues related to some of the guidelines concerning GET. There was a concern that these would be deleted. Some groups and stakeholders expressed the concern that, while some patients clearly found these damaging, others might find them helpful, or partly helpful—not as a cure in themselves but as part of their treatment. That is why NICE convened this roundtable to ensure that it hears a wide range of views. Hopefully, this can achieve some sort of consensus and help stakeholders to understand where others are coming from, so that some sort of agreement can be reached.
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I'm glad I did my own version now!

However, they did leave in his word slip, when he referred to "Covid fatigue syndrome" in his answer to Lord Bethell.
 
Lucibee said:
I did a thread on it here:




It looks like the Hansard record has been substantially amended - compare it here:


I'm glad I did my own version now!
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I've been crossposting about it on another thread. I was looking and taking notes from the video before I realised there was a "transcript". Might be me, but it seems a bit odd how it's just so loosely reported. Some sentences are just jumbled versions with the same words (why make that effort instead of just using what he says?), at other times things are left out which could or does change meaning. Like e.g. it leaves out that it was neccesary for Lord Kamall to emphasise NICE's independence as a consequence of his own words, it's not a stand-alone remark.

I have no idea if this is normal, I suspect it is, but it does diminish the use of such a document as an actual record.

Lucibee said:
However, they did leave in his word slip, when he referred to "Covid fatigue syndrome" in his answer to Lord Bethell.
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I have seen the use of the term "COVID fatigue syndrome" before in a non-BPS setting (Thomas Pueyo did a good thread on ME and how awful it is, including for example images from Whitney Dafoe, where he called Long COVID "COVID fatigue syndrome". Not great, but apparently not neccesarily a word slip pointing to influence, although you could think that it is a term the BPS crew would very much want to get used as a name for hijack purposes.)
 
Arvo said:
I've been crossposting about it on another thread. I was looking and taking notes from the video before I realised there was a "transcript". Might be me, but it seems a bit odd how it's just so loosely reported. Some sentences are just jumbled versions with the same words (why make that effort instead of just using what he says?), at other times things are left out which could or does change meaning. Like e.g. it leaves out that it was neccesary for Lord Kamall to emphasise NICE's independence as a consequence of his own words, it's not a stand-alone remark.

I have no idea if this is normal, I suspect it is, but it does diminish the use of such a document as an actual record.
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I guess they have to edit the transcript somewhat, otherwise it would be dreadfully unclear in places, given the way some people talk. But I do agree that doing so does potentially change emphasis (and possibly meaning).

Here's the example you were talking about. From the final Hansard record (in reply to Baroness Pitkeathley):
I understand that NICE wants to publish these guidelines as quickly as possible. It is very aware that there have been two delays: first, to make sure that it took on board the various comments; and secondly, the current delay because of issues raised by some clinician groups. As noble Lords will understand, NICE is independent from the Government. It hopes to progress this issue by having the roundtable, hearing all the different views and seeing if some consensus can be reached before the guidelines are published.
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And my transcript (from the video):
I understand that NICE want to be as quick as possible in publishing these guidelines and are very aware that there have been these delays, firstly the delay to make sure that they took on board all the various comments, and secondly the delay now because of some issues that were raised by some of the clinician groups. The way we hope, the way NICE hopes, as you will understand NICE is independent from the Government, the way that NICE hopes to progress on this is to have this roundtable to hear from all the different views and to see if there can be some consensus reached before the guidelines are published.
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However, I'm not that bothered that he is using "we" in this context, because to me it (subtly or not) indicates that he is in agreement with NICE, and hopes that the guideline will be published.
 
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