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

[NelliePledge]

tempting to look up the names of participants and send them the link to today's debate

 

[Dolphin]

And a 3rd mention of Sharpe.

• Carol Monaghan
  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.

Peter Denton White is/was a chief medical officer for an insurance company. I remember coming across a doctor with a lower title like senior medical officer. Clearly he must have done a significant amount of work.

I get the impression from the US numerical amounts are often given by medical doctors and researchers when making “conflicts of interest” statements. It makes them more informative.

 

[Joh]

BTW PACE is mentioned 29 times in the transcript.

 

[Bill]

I do wish there were chyrons with the names of the MPs, their districts, and their parties as the debate goes along.

As it is, the diversity in accents suggests a very wide geographical support from N. Ireland, to Wales, Scotland and England. And I've made educated guesses when it comes to the diversity of support across political parties.

This cross section of support seems so critical to carrying the day from my long-distance vantage point.

It is heartening!

Bill

 

[Adrian]

Priory uses the debate shamelessly to advertise their service – and it's CBT.

I think they have deleted that tweet now.

 

[Jonathan Edwards]

I do wish there were chyrons with the names of the MPs, their districts, and their parties as the debate goes along.

As it is, the diversity in accents suggests a very wide geographical support from N. Ireland, to Wales, Scotland and England. And I've made educated guesses when it comes to the diversity of support across political parties.

This cross section of support seems so critical to carrying the day from my long-distance vantage point.

It is heartening!

Bill

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.

 

[Jonathan Edwards]

Peter Denton White is/was a chief medical officer for an insurance company. I remember coming across a doctor with a lower title like senior medical officer. Clearly he must have done a significant amount of work.

I get the impression from the US numerical amounts are often given by medical doctors and researchers when making “conflicts of interest” statements. It makes them more informative.

And I think there is another rout in that DWP were funding and present at committees and the DWP at that time had been heavily influenced by insurance companies in setting up their strategy.

 

[chrisb]

It looks as though everyone is passing quickly over the declarations of voluntary and paid work for the UK government. I don't see why this should be regarded as less of a conflict of interest than work done for insurance companies.

EDIT apparently not everyone. Post crossed with that of JE.

 

[Hoopoe]

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

 

[TiredSam]

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'..........

I've only just watched his bit. First time so far I've been annoyed - looked like well-intentioned but not particularly well informed emotive posturing. Not the most helpful contribution. I actually thought he was going to burst into song at the end and sing "I believe, children are the future ..." Not quite up to the standard of all the other contributions, which have been brilliant. Shows that if you put the put the facts in front of reasonably intelligent people they will unanimously smell the rat, which is most encouraging. Favourite bit so far was the Irish fella (sorry brain not working at the end of the day, can't be bothered thinking properly or looking stuff up) saying that the PACE authors made up the results they wanted.

Anyone who claims not to get it now (including the minister) are just deliberately feigning stupidity for their own purposes.

 

[TiredSam]

Caroline Monaghan is our that guy who did the Hillsborough thing and ended up as the watchamacallit of Manchester. And we all know how that ended for Inspector Duckenfield (now there's a name I'll never forget even in the deepest brain fog since reading the transcripts of what happened in the police control room and watching police videos of the dead bodies piling up 30 years ago as an articled clerk at one of the law firms involved).

Inspector Sharpenfield, take note.

Andy Burnham. That's the chappie.

 

[TiredSam]

Mayor. That's the word. Mayor of Manchester.

EDIT: Bugger, it's Carol, not Caroline. Didn't feel write at the time. Or right. Bugger.

 

[Skycloud]

I think we owe some of the comments that were made in the debate today to parliamentary privilege, which was a good thing.

 

[NelliePledge]

• 
  
  
  2.50 pm
  
• Stephen Kerr (Stirling) (Con)
  It is a pleasure to serve under your chairmanship, Mr Rosindell. I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan) for this campaign, which she is doing a superb job of leading. I cannot remember the name of the academic who wrote to her reproaching her for the stance she has taken in the campaign, but I say to her, I think on behalf of us all, that she is doing exactly what an MP should be doing, and shame on anyone who says otherwise.
  

Im guessing Sharpe will be hoping the rest of them have forgotten his name

 

[NelliePledge]

I do wish there were chyrons with the names of the MPs, their districts, and their parties as the debate goes along.

As it is, the diversity in accents suggests a very wide geographical support from N. Ireland, to Wales, Scotland and England. And I've made educated guesses when it comes to the diversity of support across political parties.

This cross section of support seems so critical to carrying the day from my long-distance vantage point.

It is heartening!

Bill

yep north, south, east and west of England and N Ireland, Wales and Scotland all points covered

 

[TiredSam]

I think I can wind forward through the minister's response - I've got the flavour of it. His tone is completely wrong, he keeps quiping. His preparation seems to have been watching Unrest, and an undue amount of his time is taken up giving us his review of it. Reminds me of when my son is supposed to read a book and give a presentation on it at school - he just watches the film instead at the last minute and tries to get away with waffling on about that the next day. Expect more from a minister than an imitation of a schoolboy trying to bluff his way through not having done his homework, or trying to get away with pretending that he's listened to and understood a word anyone has been saying to him.

 

[LightHurtsME]

It is a pleasure to serve under your chairmanship, Mr Rosindell.

What was Rosindells's function today?

 

[NelliePledge]

What was Rosindells's function today?

chair of the proceedings

 

[Jonathan Edwards]

I don't think its enough for the MRC to stand back and say that they have no good proposals. They need to have a strategy to make sure such research areas are filled and that good quality proposals are created.

There is a lot to discuss in relation to this and at the moment I am only capable of throwing out one or two immediate thoughts.

I am fairly sure that there have indeed been few if any competitive proposals to the MRC. The projects funded in the ring fenced grant round recently were not exciting. There are lots of reasons why competitive proposals were not submitted but I think it is naive to discount this as the main problem.

And the reason why there are hardly any good proposals is that there are so few leads. And if you think about it 'filling the area' is exactly what went wrong last time. The MRC decided it wanted to put money into ME. It looked around for promising biological research and did not find anything. The work in the 1990s had come up blank. But some psychiatrists came along saying they had a treatment to test - so they 'filled the area', despite the proposal being rubbish. Next time it might be metabolomic rubbish or microbiome rubbish or autoimmune rubbish or whatever but the lesson is the same.

You cannot create good quality proposals in science to order. It is a bit like saying that the visual arts are in the doldrums so why hasn't the government commissioned a Rembrandt self-portrait or two. The answer is because Rembrandt is dead. The sort of science needed for ME is by definition going to arise from ideas that only one in ten thousand scientists can come up with. Otherwise somebody would already have come up with it. You might say that surely if you had a huge project that measured everything (as has been proposed here and Ron Davis is sort of doing) you are bound to find the answer. But it isn't like that. Unless you have the right ideas you will miss the answer in front of your nose because you measured things the wrong way.

Having said all that, there is another side to the coin. And that is that there must at least be some sort of optimum way of cultivating an environment in which the right people are able to come up with ideas. That sort of environment was I think not uncommon in the 1980s but I am afraid has largely gone. But there are still better and less good ways to do things. IiME made a major contribution with their meetings but my impression is that they have lost focus. As for the MRC itself my worry is that there is confusion about the layers of organisations. The CMRC in particular seems to be a strange Qango-style body that is sort of funder, sort of facilitator and sort of applicant. And the same people appear on the list of names on the actual MRC committees. And it is not clear that in five years they have got anywhere. That may shortly be proved wrong, in which case we can stop moaning, but I am not sure things are really sorted.

The stark difference between the 2013 Lords debate and today highlight the need for advocacy style to move on and become more sophisticated. I think that has to penetrate into the research culture in a way that is still not flowing well, even if certain log jams have been removed.

To put things differently, I agree that more funding is needed and that we should hope government would make a major contribution. But I don't think just asking for £20M to be put on the table is the answer. It will be swallowed up by the next set of -babblers before you can say Jack Robinson. The funding bodies are right to put the bar high. The scientist need to meet it.

New thread created to discuss these issues
https://www.s4me.info/threads/how-to-create-good-quality-research-proposals.4703/

 

[Amw66]

I think I can wind forward through the minister's response - I've got the flavour of it. His tone is completely wrong, he keeps quiping. His preparation seems to have been watching Unrest, and an undue amount of his time is taken up giving us his review of it. Reminds me of when my son is supposed to read a book and give a presentation on it at school - he just watches the film instead at the last minute and tries to get away with waffling on about that the next day. Expect more from a minister than an imitation of a schoolboy trying to bluff his way through not having done his homework, or trying to get away with pretending that he's listened to and understood a word anyone has been saying to him.

That is exactly the modus operandi of the current government full stop