Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

I tried to tweet some stuff from the debate. All told though I thought Carol Monaghan was totally amazing! She didn't "miss and hit the wall" as the saying goes. Right to the point from the very beginning.

Thanks also to my MP Jim Shannon for attending and asking a question early on about CBT & GET.

Onwards and upwards! (I hope :thumbup: )
 
arewenearlythereyet said:
Just caught the end but seemed to be quite reasonable. They seemed to gloss over COI but I think the door may be ajar for some evidence to be presented?
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Personally I thought it perhaps went as well as it could possibly go. From my naturally biased viewpoint, Carol seemed very compelling and got lots of what we might consider key points across, four or five other MPs spoke up telling supportive stories that their constituents had told them, and there was a call by another MP for a longer fuller debate in the House of Commons. I'll remain cautious in my optimism but it looked like there was some momentum building.
 
If this could shift PACE into the political arena and thereby reported by political journalists, the SMC's stranglehold on science media reporting might become much less significant. (I almost missed a typo, where I missed the 'f' in shift ... was almost tempted to leave it ;) ).
 
MeSci said:
Seven years? If only...23 years this year.
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The article was of course referring to the length of time since publication of the PACE Trial.

I thought Carol Monaghan deserved a medal. Brilliant speech. Wouldn't mind getting hold of it to publish on the ME Association website.

Anyone know what MRC-funded study into brain function and ME/CFS symptoms, the Minister was referring to? I couldn't think of any pending study. There are a few that the MRC funded back in 2011 but nothing I recall being about the 'brain'.

BBC Radio Scotland Kaye Adams show featuring M.E. again at 12noon if you are able to listen...
 
Binkie4 said:
Is there a recording of the debate anywhere? Very disappointed to miss it but my worsening sleep schedule put me to sleep at 10 to 7 this morning, and it was over when I woke.
Your reports sound good......I could do with some good news.
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You can watch it again using the same link as the live debate - just slide the bar back to the PACE Trial. But I believe it will be published as a separate recording at some point. I'll post the link when I write up Dr Shepherd's notes later in the week.

http://www.parliamentlive.tv/Event/Index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?agenda=True

All the best
 
I think it went very well, given the very short time frame. A number of MPs participated on our behalf, and made some very strong points. They were very on target, and very clear and telling.

Carol Monaghan was superb. She's clearly furious about it all, and was very well briefed. She must have done a huge amount of work.

She said that she been contacted by around a thousand people about the debate, including from the US and Australia.

Good that the minister agreed that perhaps more time is needed to debate the issues. While she fudged a bit in places in her reply, she also admitted some points - they clearly have heard the message and do realise the issues.

An MP: "this cover-up and the way the PACE trial was carried out amounts to a miscarriage of justice for patients".
Carol Monaghan: "I think that when the full details of the trial are known that this will be put down as one of the biggest scandals of the twenty first century".
 
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Andy said:
Personally I thought it perhaps went as well as it could possibly go. From my naturally biased viewpoint, Carol seemed very compelling and got lots of what we might consider key points across, four or five other MPs spoke up telling supportive stories that their constituents had told them, and there was a call by another MP for a longer fuller debate in the House of Commons. I'll remain cautious in my optimism but it looked like there was some momentum building.
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Totally agree Andy, and there were no MP's trying to defend PACE, not one, that in itself is astonishing and I think very significant.

Compare that with the House of Lords debate where Peter White managed to get a whole range of Lords reading out his spiel defending the indefensible whilst the Countess of Mar was almost a lone voice speaking out against it.

How times have changed.

Carol Monaghan came over as informed and confident in her assertions.

The comment about it being the biggest medical scandal of the 21st century was bloody marvellous!

Thanks so very much to Carol Monaghan and the patients and their families who have been working with her to allow this to happen, and to all who contacted CM with their stories with PACE.

Also it was so good she pointed out this is a worldwide issue, not merely UK.

It was a joy to watch!
 
Russell Fleming said:
Anyone know what MRC-funded study into brain function and ME/CFS symptoms, the Minister was referring to?
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Could it be this? Due to end Sep this year.
A Unified Mechanism for Functional Neurological Symptoms

With this work, we want to test a new theory for how functional symptoms can arise from the brain. One of the difficulties in understanding functional symptoms is that the brain and the rest of the nervous system appears to be intact, despite severe symptoms. Indeed in patients with some types of symptoms, for example people with limb weakness, it is possible to demonstrate on examination that the apparently weak limb can generate normal power, even though the patient cannot get this to happen him or herself. We believe it is vitally important for research and development of better diagnosis and treatment for us to understand how functional symptoms are produced by the brain.
....
Chronic fatigue syndrome is a disabling condition characterised by persistent fatigue in the absence of a clear medical cause. We believe that fatigue in chronic fatigue syndrome may occur because of abnormal activation of a network of structures in the brain that are usually involved in signalling the presence of infection and inflammation in the body and which give rise to a common set of symptoms experienced by everyone (and indeed across species) when infection or inflammation occur (known as the "sickness response"). This sickness response is usually short-lived, but we believe that the system could be abnormally activated in people with chronic fatigue syndrome in the absence of any ongoing infection or inflammation in the body.
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http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1
 
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