UK 7 June 2018 | MSPs discuss ME treatment on Holyrood Live

Sasha

Sasha

Senior Member (Voting Rights)
https://www.bbc.co.uk/news/live/uk-scotland-scotland-politics-44355292

There are four items on the summary of what will be discussed, and the first is:

  1. The petition committee takes evidence from a young ME sufferer calling for a review of treatment
I think there might be another thread on this on the forum but thought this event should have its own thread (partly so that it can have a calendar entry).
 
@Sasha thanks for posting!

It's being recorded live by the BBC for Holyrood live, so folks should be able to watch it from the link in first post.

Scottish Parliamentary researchers have prepared a briefing for the committee members, which they will read beforehand, this can be viewed here: http://www.parliament.scot/ResearchBriefingsAndFactsheets/Petitions briefings S5/PB18-1690.pdf

I'm doing a 5 minute opening statement, have spend the day desperately trying to cut the speech down to this length- trying to remind myself that I can't fit in everything!

@Simon M, we met Prof Ponting a few months ago and he's been wonderful, we feel very lucky he's coming with us. And btw great work by you and him on getting the PhD funding!

Edit: I am so brainfogged from preparation right now so really hoping this post makes sense:confused:
 
BBC said:
Ms Shorter will be joined by her mother Janet Sylvester to discuss their experience.

The petition, brought by Emma Shorter on behalf of ME Actiion in Scotland calls for investment in research, more training for healthcare professionals and more specialist care.

Prof. Chris Ponting, chair of medical bioinformatics at Edinburgh University and deputy chair of the UK CFS/ME Research Collaborative will also give evidence.
Click to expand...

I didn't realise Chris Ponting would be giving evidence! :thumbup:

It's streaming now - they're talking about various petitions but not the ME one yet.
 
@Emsho, you were brilliant! One of the MPs mentioned 'leadership and courage' and you just demonstrated that in spades. Your presentation at the beginning was so brave, eloquent and moving.

Thanks so much for doing this for all of us. I hope you don't get too much PEM payback!
 
For anyone who didn't see this, it will be well worth watching the playback.

Chris Ponting stuck a polite boot into the PACE trial more than once, and did an excellent job. In future, I'd like to see the conflict between the objective and subjective outcomes in PACE played up more - I think they're really telling, especially for a lay audience who might struggle with the whole 'nonblinded' thing.

Chris mentioned the 20-fold discrepancy in research funding between ME and MS - very telling. :thumbup:

The whole thing seemed very well received by the MSPs present, and there were some good questions. I lost concentration at the end when the 'what next' was being discussed o_O so I don't know what the upshot was, but it sounded as though things were going to be taken forward.
 
Facebook post from MillionsMissing Scotland
Here is our team this morning at the Scottish Parliament’s Petitions Committee: Prof Chris Ponting of The University of Edinburgh, and Janet Sylvester and Emma Shorter of MEAction Scotland.

We’ll be reporting back and providing details of the meeting in due course.
Click to expand...
 
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