UK Parliamentary debate today - Thursday 24th January 2019

Jonathan Edwards said:
There is a Select Committee looking at the PACE issue - with Monaghan and the other young male MP David Tuller and I met up with (?Mark Jones) on it.
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I don't remember anything about this - did I miss an announcement? Can you say more?



I realise that and I am not sure why not. It may not necessarily be a bad thing.
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If the MRC are putting out a call for biomed proposals then it helps promote the idea that ME is a disease for which biomed proposals are appropriate, and it would at least help fight the 'all in their heads' notion (or, as we've just heard, the 'Multiple Excuses' one).
 
Adrian said:
I suspect this is really significant. I would be very surprised if Wessely and friends hadn't tried to lobby some MPs to support their work and found no one.
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I hope so. The other possibility is that PACE has served as the stepping stone they wanted, they have now forged alliances for bigger and better schemes, and no longer need to defend PACE tooth and nail, and in fact are now too busy with their greater plans to bother.
 
This was the official Parliamentary briefing for the debate (haven't managed to read it all yet)
but this bit jumped out (see my numerous posts on the subject particularly regarding AfMEs literature)

"The effects of CFS/ME can affect an individual’s life in a number of ways. Severe fatigue can make it very difficult to undertake many normal everyday activities and some people will have to adapt their lifestyles. Some people cannot maintain employment".

Re the 'adapt their lifestyles', understatement of the millenium, that applies to all pwME.
And as for 'cannot maintain employment', that would be circa 75% , not 'some'.

full report here:
http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf

from this page
https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2019-0014

anyone know who exactly compiled/helped to compile this?

eta: authors listed as
Authors: Nikki Sutherland; Sarah Barber; Rachael Harker no idea who they are
 
Jonathan Edwards said:
Thinking again about the debate what now strikes me is that something quite significant has been achieved, due to Monaghan and Morgan's skill with tactics, which we may underestimate. The last debate was about PACE-bashing in general. This time there was a specific motion that the House calls for suspension of recommendation of GET and CBT. That does not amount to telling NICE what to do but it is pretty remarkable for the Commons, sitting in the main chamber rather than some offshoot chat-room (Westminster Hall), to tell NICE that MPs unanimously think they have got their guidelines wrong. There was not a single attempt to defend these treatments. Moreover, the cogent reasons for suspending recommendation will be noted in Hansard.

Nothing may happen immediately but it seems likely that those who support these treatments are going to find themselves thinking they may actually have to provide some justification rather than just pulling rank.
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Yes. It should make it considerably harder for the "old guard" members on the NICE guideline committee to try and sweep things under carpets - their accountability may have just become rather more tangible for them. May just make things a bit less of an uphill struggle.
 
Adrian said:
I suspect this is really significant. I would be very surprised if Wessely and friends hadn't tried to lobby some MPs to support their work and found no one.
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Another good point. I would like to think their lobbying attempts will fall on increasingly stony ground. Maybe this coming year one of the investigative journalism TV programmes will find the political climate less terrifying, and do something worthwhile.
 
I wonder if it would be useful to ask the 27 members who spoke whether they are surprised that the BBC and national media have failed to report the debate? They must be familiar with the level of reporting that comparable debates get, and it might help the penny drop for when the debate moves on to the SMC in the future.
 
Adrian said:
Also lets not forget the state guardian for children thing in Scotland which could have a really bad impact on children and be used as a mechanism for forced treatment.[/Q
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Nasim Marie Jafry said:
Our version is the 2010 Scottish Good Practice Statement, SGPS, not quite as bad as NICE GL, but still far from perfect. Clare Gerada - at the time chair of RCGP - and Edinburgh neuropsych Dr Alan Carson both contributed to SGPS, to the detriment of PwME. I was not involved at all w the development but my understanding was it was a total stramash, lots of unhappiness at Gerada and Carson’s input at time. I am not clear why Clare G was involved either as UK chair...

https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/
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Meant to add, while the actual document of SGPS is preferable to NICE, I am not sure how many GPs up here actually read it, my sense is they prob default to NICE GL... And the Edinburgh/Lothian CFS clinic, whose treatment harmed Emma Shorter, doesn't appear to be in a hurry to change its GET/CBT policy. It is, though, the only ‘ME’ clinic in Scotland.
 
TiredSam said:
I wonder if it would be useful to ask the 27 members who spoke whether they are surprised that the BBC and national media have failed to report the debate? They must be familiar with the level of reporting that comparable debates get, and it might help the penny drop for when the debate moves on to the SMC in the future.
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This number 27 is getting to me, seeing as it coincides with another highly political membership figure that is constantly in the news :rolleyes: :p
 
TiredSam said:
I wonder if it would be useful to ask the 27 members who spoke whether they are surprised that the BBC and national media have failed to report the debate? They must be familiar with the level of reporting that comparable debates get, and it might help the penny drop for when the debate moves on to the SMC in the future.
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Yep. I said similar earlier in the thread. It will become extremely obvious to a lot of MPs now how such important health/science news is effectively censored by the media. They may then hopefully begin to ask their own questions, at least among themselves initially; they will have a good sense of what would normally get reported and how, and what not. I suspect it is why the SMC has stayed very quiet - they know that if they trot out their usual tripe it will likely be seized on by people much harder to bully, and they cannot report the honest truth (I mean, where would that leave them!), so doing the only thing left to them ... nothing! Hiding under their stone hoping no one will lift it.
 
Sasha said:
I don't remember anything about this - did I miss an announcement? Can you say more?

If the MRC are putting out a call for biomed proposals then it helps promote the idea that ME is a disease for which biomed proposals are appropriate, and it would at least help fight the 'all in their heads' notion (or, as we've just heard, the 'Multiple Excuses' one).
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If you remember Carol Monaghan asked some questions at this committee many months back. Mark Walport was involved but did not really engage. I don't think there is any specific enquiry into PACE but it is on committee members minds as an example of broader issues they are supposed to be addressing about quality in science.

I suspect the PR situation at the MRC is very complex. Putting out calls may not help the fight if it wakes up sleeping dogs on the other side.
 
TiredSam said:
I wonder if it would be useful to ask the 27 members who spoke whether they are surprised that the BBC and national media have failed to report the debate? They must be familiar with the level of reporting that comparable debates get, and it might help the penny drop for when the debate moves on to the SMC in the future.
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''Yesterday in Parliament'' BBC Radio 4 ,11.30pm listen from 21.45 minutes to 23.10 minutes. Included a little bit from Carol M and the minister. So the BBC gave us about 1.5 minutes.
 
Jonathan Edwards said:
If you remember Carol Monaghan asked some questions at this committee many months back. Mark Walport was involved but did not really engage. I don't think there is any specific enquiry into PACE but it is on committee members minds as an example of broader issues they are supposed to be addressing about quality in science.
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Select committee on science and technology's enquiry into research integrity?
https://www.parliament.uk/business/...ies/parliament-2017/research-integrity-17-19/
 
Sasha said:
https://www.bbc.co.uk/programmes/m0002d9g

Edit: This is yesterday's 8:30pm programme but seems to be the wrong one. Can anyone find a link to the right one?
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Here is the correct link - but no sign of the section on ME: https://www.bbc.co.uk/programmes/m0002djw

It's very sad that there is so little coverage of this in the mainstream media. I've done a search, and this is what I've come up with:

Christians with ME celebrate debate on condition reaching parliament
https://www.premier.org.uk/News/UK/...brate-debate-on-condition-reaching-parliament

Belle and Sebastian singer backs Parliament debate on ME treatment
https://www.homecare.co.uk/news/article.cfm/id/1604881/chronic-fatigue-parliament-debate-ME
 
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