UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

Sly Saint said:
Was I the only one screaming at the screen? I thought it started off well but (yes I know,ever the critic); the issue of the type of CBT dished out to ME/CFS patients,

Steven Pound was it who kept saying 'encephalomyelitis', then went into a big thing about the children, and saying it might be psychosomatic(?)...........

If he's so worried about the children I would have thought the first thing would be to stop Crawleys 'research'..........

As for the minister, as @Andy has said every sentence almost contained 'should'; well yes that's what they always say even when it's been pointed out time and again what's happening in reality.

I'm sure I will think of more.
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Yes Stephen pound was so caring and persuasive but had the name wrong and then throwed in it could be psychosomatic WTF, not Helpful. And yes FITNET & magenta, LP Research wasn't even mentioned which was a big error, talking about PACE and kids but not the Behavioural research on kids which Is all they're getting, costing millions.

In my view calling for recognition of IOM report and acceptance of its very useful description definition, would be a good starting point for the campaign and any other debate. The psychological debate is over and leaving it entirely open to question helps no one

Secondly surely there's a case to re establish the ME APPG, with possibly 25 or more MPs now keenly interested. The MPs could discuss areas to work on, plan their group effort more effectively and educate each other to iron out the stuff that's mistaken or unhelpful.

Nicky Morgan I think would have been an asset, as a minister they're more focused on action rather than local (Dorset) support groups , although that MP did make the point that GPS aren't making support recommendations which might tie in with why ME Association has low membership and impact research fundraising potential from within the community Which we were discussing a few days Ago.


The MRC just suck to me in their inaction and excuses , "but we issued a highlight notice" but I do think we are, as they are in behind doors discussions, perhaps unlikely to see any movement from them before their pre planned conference announcement In the fall. Do we keep going at the funding issue with numbers so we influence things or direct energy elsewhere & let them just decide.
 
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I think the debate served its purpose very well.
As Carol Monaghan said afterwards, these things only fly if there is cross party agreement, which there was. She is clearly seeing this as just the beginning.
I was thinking of trying to write up some sort of commentary and may do that but for the moment will probably just respond to one or two posts above.
 
Esther12 said:
Think I'll be too nervous to watch live, so will wait for the transcript. Really hope it's more of a hammering of PACE (and the failure to respond properly to critics) than an exercise in sympathetic but vague 'awareness raising'.
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Wimp @Esther12 ! It was entirely benign. Only when the minister spoke could one begin to feel a bit annoyed.

I think PACE was interred appropriately. I think to ask more would be unrealistic. And I think the theme of the debate had to be about moving on. Unlike you, very few people, and probably none of the MPs, have a grasp of just how deep the flaws in PACE are. If the truth were to have come out, firstly the MPs would have started to flounder around with ideas they did not follow, and secondly the debate would have had to conclude that pretty much all psychiatric clinical research is crap. I think that would have led into nowhere.

I did not really get a sense of deference to institutions. The atmosphere was of genuine scepticism about how the medical establishment were handling things.

The minister defended the MRC and the procedure of NICE. I will come back to those but I think that was fair. There is no way that the MRC should be asked to fund whatever stuff is proposed for ME and no way that NICE should be influenced by MPs. In certain details he showed an inappropriate deference, yes, but then that is what government ministers always do.
 
Londinium said:
Told Carol Monaghan her behaviour was 'unbecoming of that of an MP'. Wow. In many respects, it's good for Parliamentarians to receive the same slander that ME patients have.
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As far as I am aware the author of the email was identified only as a 'he' author of PACE.

But it is difficult to believe that there are two authors of PACE with such a cocooned view of the world.
 
Keela Too said:
This is going well. I was expecting some resistance from other view points, but they don't seem to be starting yet??
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This is interesting. Sitting there I did not feel a sense of surprise that nobody disagreed but it was interesting to gradually realise that all the contributions were going to be on message (excepting the minister). If this had been a debate about abortion surely things would have been totally different. OK if the debate was just about having more money for research than presumably whatever the topic everyone would have agreed (except the minister). But the problems with PACE were dwelt on quite heavily and one realised that nobody was going to disagree. Supporting CBT is never going to be a vote winner. Which is why I still think somewhere down the line IAPT is going to crash of its own accord.
 
Yes, I almost made a post to highlight the stark contrast between current MRC projects and completed ones. Time will tell if this is good work but at least they are not funding more work like PACE and SMILE.

Anyway, my comment was about him wanting to advise Carol Monaghan on the science of ME. The software just inserts the tweet that is being responded to as well.
 
Sly Saint said:
Was I the only one screaming at the screen? I thought it started off well but (yes I know,ever the critic); the issue of the type of CBT dished out to ME/CFS patients was not brought up/explained

Steven Pound was it who kept saying 'encephalomyelitis', then went into a big thing about the children, and saying it might be psychosomatic(?)...........

If he's so worried about the children I would have thought the first thing would be to stop Crawleys 'research'..........

As for the minister, as @Andy has said every sentence almost contained 'should'; well yes that's what they always say even when it's been pointed out time and again what's happening in reality.

I'm sure I will think of more.
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the way he kept going on about "the children" made me wonder if he was going to segway into how wonderful Crawley is
 
Trish said:
NICE guidelines
CBT/GET - many patients disagree. NICE says patients have choice and right to refuse.
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This for me was the one place where the minister showed himself to be a fake. The idea that patients have a right to choose is totally implausible to anyone with common sense. He is hiding behind the NICE party line given to us at the stakeholder meeting. So he is taking his briefing and finding it convenient. But both Tories and Labour have committed much more serious crime sin this story and I doubt anyone in the room took what he said as anything more than parroting his briefing. Moreover, Monaghan produced a cast iron response that will be on the record.
 
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