UK Parliamentary debate today - Thursday 24th January 2019

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).

 

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

 

I'm mild and I'm living half a life. I'd love to know who the people are who don't have to adapt their lifestyles. I think I do know.

 

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.

 

Yup, it came to me. Never was good with names. But I remembered his face.

 

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.

 

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.

 

This number 27 is getting to me, seeing as it coincides with another highly political membership figure that is constantly in the news

 

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.

 

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.

 

wouldn't that be nice if more UK journalists started to do their jobs properly!!

 

Wow!

 

Was that more or less than the woman who started going on about her football team afterwards? Or the knife crime debate in Westminster Hall?

 

Select committee on science and technology's enquiry into research integrity?
https://www.parliament.uk/business/...ies/parliament-2017/research-integrity-17-19/

 

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?

 

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