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

The questions are the important bit here I think. And they are now part of the record.

 

Lord Bethell seemed rather better informed.

 

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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

 

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

 

That was worse than usual because he is new to the job.

 

My impression was that it was pretty positive - when will you (NICE) get on with publishing the guidelines? From a patient perspective that actually looks positive.

 

He was the former minister, so would have known more of the history.

 

the (uncorrected) transcript is now up online https://hansard.parliament.uk/lords...8AE-CECB51B25D93/HealthChronicFatigueSyndrome The corrected version should be up sometime tomorrow at the latest.

 

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...

 

I did a thread on it here:
https://twitter.com/user/status/1447948742691368978


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

I did my own transcript - the key question is here:

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

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

"Some groups and stakeholders expressed the concern that, while some patients clearly found these damaging, others might find them helpful, or partly helpful".

Just as some people might have found Thalidomide helpful.

 

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.

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.)

 

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):

And my transcript (from the video):

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.

 

Hansard is a “substantially verbatim” report of what is said in Parliament. Members’ words are recorded, and then edited to remove repetitions and obvious mistakes, albeit without taking away from the meaning of what is said.

https://hansard.parliament.uk/about