UK Parliamentary debate today - Thursday 24th January 2019

strategist said:
Is it enough to stop the BPS people putting out the usual articles on good science being under attack by despicable activists?
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If the SMC put out their usual spin this time, every MP who was in the chamber or watches the debate will clearly see them for what they are. The SMC will probably continue until they are calling everyone else in the world a liar, but the number of people involved and likely to think "Hang on a minute, I was there ..." is growing all the time. So let them demonstrate their antics a few more times before the debate becomes about them, it will serve our purposes nicely.

Andy said:
Talking of that kind of thing, any sour grapes from Sharpe's Twitter feed?
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Ah yes, there is always that to look forward to. Railing against all those MPs behaving in such an unbecoming manner.
 
Adrian said:
Whilst its not in the power to determine what is funded or what treatments are recommended I do think they have a responsibility to look at failures of the funding system such as why so little is funded (or why there are too few applications) or why the system funded PACE when its protocol wasn't up to answering the questions asked.
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A public enquiry maybe.
strategist said:
Is it enough to stop the BPS people putting out the usual articles on good science being under attack by despicable activists?
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I'd like to see them give it a go, because they will be accusing a lot of prominent MPs in that case, so I doubt they will now. But it really highlights to a wider audience how empty and histrionic their previous accusations have been.
 
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Cinders66 said:
Is there some contradiction and little point of patients lobbying MPs on research funding action and them speaking on it, if carol MP isn’t going to take that further because she’s been briefed it’s not the ministers, or MPs Place to interfere.
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That was not what I was trying to imply. What I was suggesting was that Monaghan was convinced that she could have impact and rightly so, but not by forcing a minister to make promises in a debate. The point of the debate is to shift the perception. Maybe if perceptions shift enough and Nikki Morgan has a word in the ear of Mark Walport who has a word in the ear of Fiona Watt and somebody is quietly asked to stand down from their advisory position ... and so on. It is not the place for ministers to interfere with independent bodies but there is no harm in helping people to suddenly see things a bit differently. Science moves by shared perceptions. You cannot overrule that. The BPS people have worked through controlling perceptions.
 
I'm bracing myself for tomorrows media reports if any.

I expect them to be along the lines of what Steve Brine says. In that they seem to come out in support but then go on to undermine the support with untrue statements pretending to be authoritative facts on the subject. I expect that some of the media have been thoroughly briefed and will be bringing their 'A' game and using subtle barbs toward ME patients and advocates.

From reading/skimming above I take away two points (there may be more to mine and bring to light) from what S Brine said.

People can 'opt out'. Except we know that insurance demands it (even in Canada). And families with sick children run risk of child protection services.

Also, there were in fact biomedical applications submitted and worth funding as the NIH clearly thought so.

I think there needs to be a public rebuttal to his disingenuous responses.
 
I'm guessing the SMC will come up with some wishy washy half-baked news report on today's debate, or maybe not at all. Whatever it is, or is not, it would be good for the MPs who attended today's debate to have that brought to their attention in due course, so they can see how the SMC influences the media in this area (as I'm sure it does in many other areas).

Edit: X-posted with @Snowdrop.
 
I'm expecting the Science Media Centre crew to be working behind the scenes at this point, rather than doing more that risks making them the story. They didn't do anything openly about Cochrane saying they wanted to withdraw Larun's Cochrane review.
 
Further to the topic on the 90 min online RCGP training course on ME for doctors the Minister mentioned in the Parliament debate today, Invest in ME have just written to tie in with the debate a great document on the main issues in ME. Pages 14-21 go into great detail on the lack of appropriate medical training and education. In it, it says, ‘no acceptable courses exist for ME for doctors that are not been based on these BPS theories of ME.” I will take that as further evidence that the RCGP online course is almost definitely bps based.

http://investinme.org/Documents/Fac...or Action - Parliamentary Debate Jan 2019.pdf
 
Trish said:
My predictions:
Nothing in the media
Nothing from the SMC
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Which will be a case of silence speaking volumes. And less likely to go unnoticed. I suspect there may be a degree of hand wringing going on.
dangermouse said:
I wasn’t able to listen but from what I’ve read and especially the poor response from the Health Minister I feel disappointed too. I don’t know what I expected but it wasn’t that.
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I think the health minister's response is of minimal concern, strange though it may seem. We all knew it would be nothing else. It's everything else that is so very good.
 
@EspeMor , do MEAction have any plans for a guide/easy to use tool for patients to be able to follow up with their MP about the debate. i.e. thank you for speaking at the debate/thank you for attending the debate/saw you weren't at the debate and this is what you missed (delete as appropriate) type of thing? Similar to what was created to help patients ask their MPs to attend?
 
anniekim said:
Would have liked a bit more on psychs harmful dominance on ME and the discredited bps model but overall considering the amount of issues MP’s must study I thought they did a good job.
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I wrote the above just after watching the debate and having missed the first bit of Carole Monaghan’s opening speech. So only until I read the transcript did I see she touch on the psychs role in wrongly portraying ME as a primarily psychological condition and of course the failure of the PACE trial results in supporting their dreadful deconditioning theory.
 
dave30th said:
What was this? I don't remember from last time.
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Steve Brine said:
I am surprised that other than the hon. Member for Bristol East (Kerry McCarthy), nobody mentioned “Unrest”. I know it well. Some constituents came to see me to tell me about the film. It had screenings in Winchester and Chandler’s Ford in my constituency, which were oversubscribed—packed to the gunwales—and there was not a dry eye in the house. I pay great tribute to Jennifer and her partner Omar who made that film. I am sure there were times when it gave Jennifer’s life a great purpose, but I am sure there were times when she wanted to say, “Get that bleeping camera out of my life!” There is a touching moment at the very start of the film when she says that when she was a young girl, she want to eat the world “whole”, because she wanted to see it all and do it all. That went to the heart of her great disappointment that she was so sick.

Jennifer set out very clearly and movingly the sheer ups and downs of this condition. For some, it is almost a constant down. I was struck by watching her at the Princeton University reunion day, during the rather surreal procession through the streets by old boys and girls from Princeton. She so enjoyed seeing old friends that day and looked full of life, but within an hour of it finishing she was absolutely poleaxed on the floor, saying that she felt her eyes were being pushed out of her head from the inside. It was horrible to watch.

It was interesting how the film moved around the different wild and crazy treatments that are out there on the internet. If hon. Members google any condition, they will see lots of wild and crazy treatments, but that is particularly the case with ME. One of the saddest things in it, although it covered it well, was the point that my hon. Friend the Member for Cheltenham (Alex Chalk) raised of the suicides resulting from this condition.
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http://bit.ly/2zafyfC
 
dave30th said:
What was this? I don't remember from last time.
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He spent a good chunk of his time for responding to the points raised in the June debate going on about how he had seen Unrest giving his take on the film and the effect it had had on him - it felt like MEsplaining to me. Clearly the film had not enough of an impact for him as public health minister to actually do anything constructive. He clearly said in his comments this time that he had had discussions with top woman at RCGP in the last couple of days although I believe he said in June that he would contact them to see what they said about education of GPs about ME. Suspect the briefing he received from civil servants this time would have reminded him of this and he realised diddly squat had happened. Can you tell I’m not impressed by him. I’m a natural cynic but I find him smug and glib.

ETA I’ve checked Hansard for June he said he would send Helen Stokes Lampard of RCGPs a copy of the debate to get her take on the points raised - it would appear that may have taken until now to actually happen or at least for any substantive discussion to happen.
 
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https://hansard.parliament.uk/commo...4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

The notes are out now

“ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted.


Surely it would just take a second!




. One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding.

Well they were given allotted funding too by the department of health for research as part of that package... But yes precisely, a comprehensive action plan was designed And implemented to stimulate the field. Where was his action plan for ME , there was no mention of anything to improve the situation.




The truth is—sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma—a point raised very well by the hon. Member for Lincoln; she looks delighted that I have mentioned her—and partly because of the division in the medical community. We need people to come forward with good research proposals in this space; that can only be advantageous.”


Stigma - caused by the medical profession, stigmas doesn’t just arise from illness being unexplained or complex. So the establishments fault.

Division in the medical community, well how is that going to change. We have been needing people to come forward since the MRC 2003 highlight notice but they haven’t. Stating something that isn’t happening and won’t just happen would be advantageous if it did, as if it’s the answer, is not helpful. I need a cure , that would be advantageous. Would the minister care to predict, on past and current levels of progress, how many years it’s away?
 
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