Lord Winston, for example, who should have known better, given his previous career was in medicine.
Agree. We have to adapt to the phase the argument is at in the political sphere.
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UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan
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Barry
Senior Member (Voting Rights)
Oh she's good. Not just how she has got up to speed with all this, but well enough to get in there with it on the fly.
Huge thanks to everybody in the patient, medical, and parliamentary communities who made this debate possible and made sure it was well informed. Likes for all! 
If we can break the back of this monster in the UK, from whence it was hatched, then it is basically over. Then we can turn our attention to the remaining handful of isolated holdouts, such as in Denmark.
If we can break the back of this monster in the UK, from whence it was hatched, then it is basically over. Then we can turn our attention to the remaining handful of isolated holdouts, such as in Denmark.
Barry
Senior Member (Voting Rights)
Quite so. He's been showing himself up now for what he really is, to those he should have realised would have been better (from his perspective) to have left in ignorance. Intelligence has many facets, and it's intriguing how someone like MS is obviously so intelligent in some ways, can be so very stupid in others.
Barry
Senior Member (Voting Rights)
Who is this minister?
https://www.actionforme.org.uk/news/parliamentary-debate-on-me-our-summary/
brief summary posted on AFME website
Parliamentary debate on M.E. - our summary
June 21, 2018
“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments at all.”
Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has been speaking out on the lack of appropriate treatments and biomedical research available for people with M.E. at a debate in Westminster Hall today.
Carol Monaghan MP highlighted the flaws of the PACE trial and the influence it’s had on healthcare and insurance for people affected by M.E. before informing the gathered members that Professor Sharpe – one of the PACE trial authors - has this week emailed her to say her actions are “unbecoming of an MP”. In response to his message, Carol Monaghan said: ““If members of parliament are not willing to stand up for the most vulnerable members of society, what hope do we have.”
The debate went on to highlight the effect M.E. has on children and the way social services are often called in when a child is too ill to attend school, the lack of biomedical research funding provided by the government, and that “the treatments that are currently available are often more damaging to the person than no treatments at all.”
Carol Monaghan MP stated that “the hope of the M.E. community is that when the NICE guidelines are revised GET will not be featured” and described how “the lack of understanding shown by some healthcare professionals to a person with M.E.’s suffering is one of the greatest frustrations.”
Several MPs later spoke on behalf of their constituents to raise awareness of the impact of M.E. before Carol Monaghan MP delivered a message to the M.E. community: “I don’t see this as being the end…the fight for the people with M.E. continues.”
A full transcript of the debate will be available on the Hansard website in the next few days.
brief summary posted on AFME website
Parliamentary debate on M.E. - our summary
June 21, 2018
“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments at all.”
Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has been speaking out on the lack of appropriate treatments and biomedical research available for people with M.E. at a debate in Westminster Hall today.
Carol Monaghan MP highlighted the flaws of the PACE trial and the influence it’s had on healthcare and insurance for people affected by M.E. before informing the gathered members that Professor Sharpe – one of the PACE trial authors - has this week emailed her to say her actions are “unbecoming of an MP”. In response to his message, Carol Monaghan said: ““If members of parliament are not willing to stand up for the most vulnerable members of society, what hope do we have.”
The debate went on to highlight the effect M.E. has on children and the way social services are often called in when a child is too ill to attend school, the lack of biomedical research funding provided by the government, and that “the treatments that are currently available are often more damaging to the person than no treatments at all.”
Carol Monaghan MP stated that “the hope of the M.E. community is that when the NICE guidelines are revised GET will not be featured” and described how “the lack of understanding shown by some healthcare professionals to a person with M.E.’s suffering is one of the greatest frustrations.”
Several MPs later spoke on behalf of their constituents to raise awareness of the impact of M.E. before Carol Monaghan MP delivered a message to the M.E. community: “I don’t see this as being the end…the fight for the people with M.E. continues.”
A full transcript of the debate will be available on the Hansard website in the next few days.
Barry
Senior Member (Voting Rights)
Yep, I twigged eventually
. Lots to catch up on here! Edited post.Tom Kindlon
Senior Member (Voting Rights)
Esther12
Senior Member (Voting Rights)
Yeah, it's available here: https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98
Esther12
Senior Member (Voting Rights)
Welcome. PS, transcript here: https://hansard.parliament.uk/Commo...4E35-A83B-49FEF0D6074F/METreatmentAndResearch
Invisible Woman
Senior Member (Voting Rights)
Steve Brine, I think.
Invisible Woman
Senior Member (Voting Rights)
Perhaps now they can update their treatment recommendations page?
John Muir (@johnamuir) Tweeted:
@profmsharpe @JonesyJ49 @tottyscone_one @Saturnation8 @davidtuller1 Read the transcript - defamation? Have to be a little more specific, who defamed you, and what did they say that would be legally actionable outside parliamentary privilege?
@profmsharpe @JonesyJ49 @tottyscone_one @Saturnation8 @davidtuller1 Read the transcript - defamation? Have to be a little more specific, who defamed you, and what did they say that would be legally actionable outside parliamentary privilege?
Jonathan Edwards
Senior Member (Voting Rights)
My impression was that this 'briefing' was a private communication from Sharpe to Monaghan. Talking afterwards Monaghan mentioned it and said something like it was 'quite entertaining'.
Apparently it included an account of the criticisms of PACE and the PACE authors' response to them. It might be interesting to see, although we have seen that before (nothing new).
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Given he works for Oxford and it was written as part of his job (i.e. backing his research) I would question whether it should be private (at least I would have thought it would be subject to the FoI act).
Jonathan Edwards
Senior Member (Voting Rights)
I was meaning private in the sense that it was sent personally rather than put out in public. Presumably its content was intended to be used in public. Carol Monaghan might be happy to share it although I wonder whether it would be worth it. It probably says nothing new. It might perhaps reveal a little more of their inability to understand basic methodology.
I am always interested to see their reasoning to try to justify their methodology and changes. I keep feeling they may say something interesting - they just haven't yet.
