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

Yes, although no party names were mentioned, and that was in itself important, I got an impression from the accents (which are fairly party specific regardless of region) that we had Labour and Tory contributions. Monaghan is SNP and we know that Liberal Democrat would have been in there in the guise of Vince Cable if there were none there today. Monaghan was clearly very pleased when we spoke afterwards that the full range was covered.

Ed Davey ( Libdem) was there and made the first speech after Carol's. A strong, strategic speech which hopefully will give the Dept of Health pause for thought. He was interested enough to rearrange his schedule to be there and to be briefed the day before.
 
This one stood out in particular:

Sir Edward Davey (Kingston and Surbiton) (LD)

I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing the debate and all hon. Members who will participate in it. It is essential that we speak for the millions missing, and it is great to see so many people in the Public Gallery.

What I find so shocking is that scientists seem not to want to have the debate. I hope that right hon. and hon. Members across the House find it shocking that the hon. Member for Glasgow North West was written to by a scientist and called out. I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate.

It is great that the NICE guidelines are to be reviewed, but my concern is that that will take some time. I am sure that is the right process; we must get it right and ensure that the voices of ME sufferers are heard. Scoping working groups have been set up in which ME sufferers have been able to participate, and that is welcome. But I find it quite scary that the current guidelines will be in place until October 2020. I have listened to my constituents and read about those of other right hon. and hon. Members who feel that if they are prescribed according to those guidelines and go through all that, it makes them more ill. Far from helping them, it makes them deteriorate. Indeed, I have a constituent who feels that the programme she was put through set her back two or three years.

Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a scientist, but from what I have read, that experience is widely shared—it is up to the Minister, working with the chief medical officer and others, to question whether the NICE guidelines should be suspended, at least with respect to GET. If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation.

No one wants that. To avoid it, surely there must be a way in which Government Ministers, working with NICE and the CMO, can issue guidelines directly to GPs and medical professionals to say, “Be careful before you prescribe GET. Ensure that you have read the evidence. Ensure that you have talked properly to the patient.” With many drugs and pharmaceuticals, there are sometimes side effects. Therapy does not work for everybody. Where is the warning in the NICE guidelines of the side effects of GET? That is serious, because people could be seriously hurt in the period between now and the conclusion of the NICE review.

I will move on to research. Looking at the work that Invest in ME Research has done, for example, setting out the calls for research in this country over two decades or more, I find it quite disturbing that those calls have been ignored. Only charities have enabled a meagre amount of research to be done. Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward.

Source: https://hansard.parliament.uk/Commo...4E35-A83B-49FEF0D6074F/METreatmentAndResearch

Thanks @strategist. An excellent strategic speech.
 
Ed Davey's constituent was me. The cardiologist actually said "pwme are mad but you're not". He thought he was complimenting me. Ed was shocked.

Really appreciate Ed spending an hour the evening before the debate to get to grips with it. He rearranged his diary to be able to do it so next job is a letter of thanks.

Thank you @Binkie4 for briefing him so well.
 
Fun quote from Monaghan here:

One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

I will leave hon. Members to make up their own minds about that.

Also, does anyone have a copy of this briefing from Sharpe? If so I'd love a copy, via pm if it's not meant to be public yet.
 
Fun quote from Monaghan here:



Also, does anyone have a copy of this briefing from Sharpe? If so I'd love a copy, via pm if it's not meant to be public yet.

I wonder how long Sharpe spent putting together that briefing? Am I right in thinking this was this the only time during the debate that it was referred to? Either way, it doesn't seem as though it was time well spent...
 
That's my daughter. I've been in regular contact with Steve Brine as my MP and keeping him up to date with how she's doing. He's actually been very responsive and interested. I emailed him earlier this week saying I hoped he watched Unrest by now and that I'd be watching today!
oh thats good presumably you can feed back to him that we'd appreciate him being a bit more sceptical about the lines to take he's been given from DoH/NICE/MRC/Medical establishment generally
 
I'd just like to say thanks to all the folks on the forum who have contributed to today particularly those who directly lobbied and briefed MPs who spoke in the debate - good to see directly the impact advocacy can have.

I haven't got anywhere with my MP and she is going to be a bit of a challenge but it has inspired me. I will be phoning her constituency office to get a meeting booked trying my best to influence her to attend when (hopefully) the Commons Chamber debate comes along in a few months time.
 
good comment now saying shame on the academic 'I cant remember his name' who reprimanded CM:D
That's a neat little double play there by CM :). On the one hand playing a well known little strategy to not name him out loud, but I suspect on the other had offering him a side swipe, telling him he is very unmemorable ... not good for his ego. And he thought he know all about word play. I think he may have some lessons to learn.

Edit: Realise I got this out of context.
 
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That's a neat little double play there by CM :). On the one hand playing a well known little strategy to not name him out loud, but I suspect on the other had offering him a side swipe, telling him he is very unmemorable ... not good for his ego. And he thought he know all about word play. I think he may have some lessons to learn.
this was one of her SNP colleague - CM did name him a couple of times
 
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