UK Parliamentary debate today - Thursday 24th January 2019

NelliePledge said:
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.
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Ironic, but I suspect that if he and Matt Hancock were not at the helm of the government's health department, they might perhaps have been on board with supporting the motion. But I'm sure the government line is there's no money to spend on anything, so that comes before anything else.
 
Barry said:
Ironic, but I suspect that if he and Matt Hancock were not at the helm of the government's health department, they might perhaps have been on board with supporting the motion. But I'm sure the government line is there's no money to spend on anything, so that comes before anything else.
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Right but some the things we’ve asked for aren’t necessarily going to need more money as they involve doing things differently. Different content for GP training, stopping GET will save money, supposedly money is already available for “the right research projects”.

ETA or at least stopping GET would free up OT resource to carry out genuinely supportive activity
 
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Thanks to everyone who put work into this debate. Especially those who have taken a leading role to work with Monaghan, but also everyone else who has contacted MPs, tried to raise awareness of the problems around PACE, etc. It does feel like we're continuing to make progress, even if it has been painfully slow and needed far more effort than it should have.
 
Barry said:
Ironic, but I suspect that if he and Matt Hancock were not at the helm of the government's health department, they might perhaps have been on board with supporting the motion. But I'm sure the government line is there's no money to spend on anything, so that comes before anything else.
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@Barry- Have I remembered correctly but isn’t Matt Hancock your MP? Apologies if I imagined this but I thought you had seen him to discuss ME. Is there any benefit to be had from following this up with him as his constituent?
 
Jonathan Edwards said:
I think this is the remit of Parliamentary select committees and there is one that is aware of the problem of PACE. But if such a committee is advised by the accepted experts that all is well it is hard for it to take things further. If all professors of mathematics say two and two is five then how do you establish they are wrong? I realise that things are more complicated but there real obstacle here is medical politics.

The CEO of MRC says PACE was fine.
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I am hopeful that in the Commons debate was the beginning of MP's official recognition of the real situation which I am sure will eventually bear fruit if we keep pushing.

I appreciate that you tried to give her (Fiona Watt) a nudge.

Many other people tried to communicate. https://me-pedia.org/wiki/PACE_trial David Tuller was appropriately critical, likewise Margaret Williams and Malcolm Hooper so I dont think she can have failed to be aware of the problems.

She is apparently not inclined to dismiss PACE and encur a political backlash from Kings, Queens and Oxford of the kind David Tuller defeated from Bristol. Fortunately for our hopes for truth and justice in medical research ethics, authorities at Berkeley are not codependant with the UK academic establishment and I hope that as long as we can fund his tenure David will continue to shine a light on mistakes in relation to ethics in ME research.

Her response https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/ indicates the "hand of cards" the PACE authors hold in the the MRC poker game, we can at least use these as a list of objectives to contend. Cochrane being an important one which is, as I understand it, being reviewed. I am grateful that other people are on top of this and doing the right thing as I am pretty spaced with the attention span of a small butterfly most days.

Fiona Watt has a strong biomedical history and very close ties to Kings and Cancer Research UK as does her husband. I think this explains Chalder's involvement in the alpha interferon study as Kings' Wessely school seek biomedical research involvement in order to be close to work which will attract MRC funding, even if that particular study was not very germane to our cause IMHO. I distrust Chalder's involvement because Wessely school psychologists became involved in ME research to serve the aims of funding from insurers and I consider the motivations resulting from this highly counterproductive to good science, since the perspectives it generated are politically motivated stereotypical projections akin to the political stereotypes which caused the antisemitic holocaust (so it is perhaps propitious that the two debates were held one after the other). Whereas the motivations of psychologists who think more clearly like Leonard Jason stem from personal awareness of the nature of ME.

I believe this situation predicts strong biomedical research funding for cancer research from the MRC. But I think given Fiona's political sensitivity, the support from MPs could lead to some funding for biomedical ME research from the MRC as well, if good applications are made. At least, it is worth trying and see what happens, which should tell us something.
 
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Jonathan Edwards said:
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.
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Again I’m confused.

You don’t think parliamentarians should interfere with any independent body or just medical elite ones ? I disagree, especially ones like the MRC connected to the government by allocating funds drawn by taxation, they have a public health responsibility, they failed on ME. Someone should have intervened when blatantly biased Colin Blakemore made the decision in 2003, despite the cmo report recommendations, that we only needed to fund behaviour research.

I thought the point of the debate was to bring about urgent action, including on funding not just shift perception. I had expected a call similar to brain cancer recent activity

I don’t want things sorted by a subtle word in an ear here a nudge there. Why do we tiptoe around the medical elite?

I do not support what carol Monaghan was being convinced of by you and I assume Dr Charles Shepherd , possibly dr weir. I’ve long been opposed to the ME Association stance on MRC funding which seems to be to either defend the MRC or vaguely complain we don’t have enough But refuse to do any radical action, including supporting #MM, to get it.

If the action plan in mind is to slowly break down the bps dominance I would not consider that enough.
 
Andy said:
@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?
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This will be vital;a follow up is needed, especially regarding the inconsistency of the various "arms" of the NHS and expressed messages.
I am committed to again highlighting the NHS (Plus) now NHS Health and Work iniquity and inconsistency.
May try a local MP who is in side to ask the minister a Parliamentary question about NHS Health and Work.
 
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Cinders66 said:
I do not support what carol Monaghan was being convinced of by you and I assume Dr Charles Shepherd , possibly dr weir.
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Hang on, that seems to me to be an unreasonable and rather rude accusation. I convinced Monaghan of nothing. She is a very self-driven lady. She knows exactly how the system works. It works by MPs pretending to persuade ministers to do things in debates like this and in the process hopefully triggering a rethink that might actually end up with something being done.

If Parliament was in a position to override the expert opinions of scientists we would have mayhem. We would have the sort of situation there is in the US where a president thinks he can override common sense by building a wall, or banning abortion. Democracy works partly by decision making by directly elected representatives but partly by delegating specialised decisions to experts. Although the MPS yesterday had got the right general idea most of them were way off beam about the details of the problem.

You then have to face up to what to do if your experts have got things wrong. You cannot just overrule them. You don't just say to the generals that you disagree and you want to drop a bomb on Iran. You have to change the climate of opinion among your experts. In the case of brain tumours no doubt the experts were ready to say 'yes that would be a good area to prioritise'. The same has to happen for ME. And there is some reason to think it might. In fact the MRC have invited a large submission. The process is already happening. At some later stage the government may proudly announce that it has decided to award lots of money for ME. I strongly suspect that is how it worked for brain tumours - the government just took credit for what they were advised to do.

All I am saying is that nobody should have expected Brine to stand up and say 'OK then lets give 10 million to ME'. But that is not an indication that the debate failed to do exactly what it was intended to do. The millions have already been offered. People are working on applying for them (I was asked to advise). The government is not going to make it look as if funding was squeezed out of them by Carol Monaghan. But I strongly suspect that the debate will be very helpful in making it likely that when it comes to actually getting some money out the playing field is a bit less tilted.
 
Jonathan Edwards said:
Hang on, that seems to me to be an unreasonable and rather rude accusation. I convinced Monaghan of nothing. She is a very self-driven lady. She knows exactly how the system works. It works by MPs pretending to persuade ministers to do things in debates like this and in the process hopefully triggering a rethink that might actually end up with something being done.

If Parliament was in a position to override the expert opinions of scientists we would have mayhem. We would have the sort of situation there is in the US where a president thinks he can override common sense by building a wall, or banning abortion. Democracy works partly by decision making by directly elected representatives but partly by delegating specialised decisions to experts. Although the MPS yesterday had got the right general idea most of them were way off beam about the details of the problem.

You then have to face up to what to do if your experts have got things wrong. You cannot just overrule them. You don't just say to the generals that you disagree and you want to drop a bomb on Iran. You have to change the climate of opinion among your experts. In the case of brain tumours no doubt the experts were ready to say 'yes that would be a good area to prioritise'. The same has to happen for ME. And there is some reason to think it might. In fact the MRC have invited a large submission. The process is already happening. At some later stage the government may proudly announce that it has decided to award lots of money for ME. I strongly suspect that is how it worked for brain tumours - the government just took credit for what they were advised to do.

All I am saying is that nobody should have expected Brine to stand up and say 'OK then lets give 10 million to ME'. But that is not an indication that the debate failed to do exactly what it was intended to do. The millions have already been offered. People are working on applying for them (I was asked to advise). The government is not going to make it look as if funding was squeezed out of them by Carol Monaghan. But I strongly suspect that the debate will be very helpful in making it likely that when it comes to actually getting some money out the playing field is a bit less tilted.
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I apologize for being rude. I did deduce, perhaps wrongly, from your comments that you and the other drs who have that specialism advised carol in a certain way when you said you briefed her.

I would not say that those who’ve made decisions on ME in the MRC have had any real expertise In it, to make outside intervention by other professionals inappropriate. Democracy does set up institutions and delegate but that can’t mean entirely above scrutiny if there’s concerns.

If millions have already been offered, there’s been no announcement of that to the community and It’s still vague. I am frustrated as sick advocates who have been and are trying to get money for years, that we have used energy lobbying our MPs on things when they isn’t necessarily in line with what is happen centrally. We are asking for funding equality, then told we get action from parliament isn’t appropriate and that actually money is given, by whom the MRC, and being applied for, again by whom?. Great but last we heard MRC had asked for more information to give a decision on funding.

Edit if you’re referring to the Karl Morten research proposal that’s just one project for £1.5 m I think.

I wasn’t simplistically expecting a trump like tramping over protocol but some type of ministerial looking into it or a committee set up to look into MRC behaviour and the ME situation generally isn’t unthinkable and then call it to account and push like that for funding equality and funding incentives. I did t Expect the minister to just hand over millions, nor did I expect him to just put up a lame excuse again with no proposals for anything better after several debates but perhaps he knows about the funding already given too. I would wish that all the behind the scenes stuff was more transparent when there is a patient movement at the same time.
 
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