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UK Parliamentary question re medical research for ME

Discussion in 'General ME/CFS News' started by slysaint, Sep 14, 2016.

  1. slysaint

    slysaint Senior Member

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    This question was raised yesterday;

    Alex Chalk Conservative, Cheltenham
    To ask the Secretary of State for Business, Energy and Industrial Strategy, what steps he has taken to encourage research into myalgic encephalomyelitis.

    Jo Johnson Minister of State (Department for Education) (Universities and Science) (Joint with the Department for Business, Energy and Industrial Strategy), Minister of State (Department for Business, Energy and Industrial Strategy) (Universities and Science) (Joint with the Department for Education)
    The Government supports research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the Medical Research Council (MRC), which receives funding from the Department for Business, Energy and Industrial Strategy; and through the National Institute for Health Research (NIHR), which is funded by the Department of Health.

    Together the MRC and the NIHR welcome high quality applications for research into all aspects of CFS/ME which would include studies to investigate the biological causes of the condition, improve our understanding of it and to evaluate treatments.

    CFS/ME research is a current MRC priority area and has funded such research to the tune of £2.1 million. Research proposals are particularly encouraged that address the mechanisms underlying chronic changes related to CFS/ME and which aim to increase research capacity by bringing new researchers into the field, building partnerships and supporting multidisciplinary teams to tackle research challenges.


    • edit (out damn spot)........ At least someone is asking the question
     
    Last edited: Sep 14, 2016
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  2. Cheesus

    Cheesus Senior Member

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    Actions speak louder than words. If they really want to deal with this they will step up to the plate and put down more than $2.1million. They will also stop funding trials into CBT and GET.

    The rhetoric here is encouraging, but political rhetoric is so often empty. We must hold them to account. I cautiously welcome this development and look forward to seeing what they really do.
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    Always encouraging to have a member of the Johnson clan on the case :aghhh:
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    Blimey, I thought that said 21! PACE cost more than twice that and it was shite.
     
  5. Cheesus

    Cheesus Senior Member

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    I know! 21 would be a decent start at least. Waving 2.1million around as if they have bestowed us a gift is an absolute joke.
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    A translation from political speak

    High Quality applications: we can turn anything down we don't like and claim lack of quality

    Multidisciplinary: this will ensure that psycho gets it's due place as team leader. Strategically placing a multidisciplinary team member from psych in a intake capacity for example could yield the desired effect.

    Addressing the mechanisms underlying chronic changes: this is why an interdisciplinary team is needed. The mind-body paradigm requires it. Is it chicken or egg. Those annoying biological changes need to be spun as happening as a result of how we feel/perceive our illness. Everyone else who gets sick doesn't get these nasty metabolite changes so you must be doing something to maintain your incapacity.

    Notice how they make a point of saying all aspects of ME/cfs --- cause that's very important. Finding the cause and a treatment/cure (on 2.1 M) really isn't the central issue.
     
  7. sarah darwins

    sarah darwins I told you I was ill

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    Blah.

    Tame question from a Conservative backbencher to a Conservative minister.

    These questions, especially when they begin "What is the government doing to address ..." have invariably been cooked up by party whips in concert with the ministry concerned to enable the minister to say something that he wanted to say anyway.

    This sounds like a quiet move to get the government's "commitment" on record and pre-empt criticism in the wake of recent and ongoing events. On the plus side it suggests they're aware that something's up. On the minus side, they're not really planning to do anything about it. Yet.

    What I'd like to see would be a question from an opposition MP to the Health minister (rather than Business, Energy and Industrial Strategy) asking why the government has not stepped in to address the scandal of NICE guidelines based on patently bogus theories and why the Department of Health is not addressing a wealth of new research across the Atlantic which suggests that the UK has been heading down the wrong road on ME for decades. What does the minister propose to do about that?
     
  8. sarah darwins

    sarah darwins I told you I was ill

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    p.s. Alex Chalk is a backbencher who only became an MP 2 years ago. ie. he hopes he has his whole career in front of him. I can't find anything to suggest he's ever shown an interest in this disease before.

    This is exactly the kind of MP who gets approached by party whips and given a question to ask that allows the minister to say "We're doing an excellent job".

    Sorry to be cynical but ... hell, that's how they roll.
     
  9. TiredSam

    TiredSam The wise nematode hibernates

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  10. *GG*

    *GG* Senior Member

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    Hey, it's about half of what the US currently spends. I would take it, and build upon it. I know the Solve ME/CFS Initiative in the US thinks they could do lots with that kind of money! Start building the Foundation for further study in the future!

    http://solvecfs.org/research/research-programs-for-patients/clinical-research-trials/

    Guess the Newsletter with Summer 2016 article is not posted Yet: http://solvecfs.org/get-involved/research1st-news-archive/

    Also, seems more than Canada will spend, not sure about Australia? Forget the rest of the world. LOL Where is the rest of the world on research actually? I know some research comes out of Japan, but leaves a hell of a lot of Countries out of the picture!

    GG
     
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  11. alex3619

    alex3619 Senior Member

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    Much of the Australian funding is private, though some comes from my state government. Our federal government does not appear to be doing much, like most countries.

    Japan actually spends a lot from what I have read. Its probably number two in spending. Not all of it we get to hear about.
     
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  12. *GG*

    *GG* Senior Member

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    Interesting, wonder what kind of numbers? Wonder if they put the USA to shame? Not sure how you would figure it out. Per capita spending or as a percentage of "Healthcare"/( or Total research funding) so to speak.

    GG
     
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  13. Stewart

    Stewart Senior Member

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    Yeah, that's what I thought. Waste of a question, waste of the time and money that was spent responding (from memory written questions cost the taxpayer about £150 each).

    He also gave his apologies to a meeting of the APPG for ME earlier this year. I expect he's got a constituent lobbying him on ME/CFS issues, and he's trying to do something to respond to their concerns/keep him or her happy (delete according to how cyncical you feel today... ).
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    Maybe people should thank this guy for asking the question. Who knows but he could be a good one to further educate rather then trying to get offside and the truth is we do need to be tackling this illness at the highest levels. Being cynical at someone who is at least asking questions doesnt help us.

    Yeah I dont think much of that answer but the other did ask a decent question.
     
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  15. Stewart

    Stewart Senior Member

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    You're right - the fact that he was willing to ask a question (and give his apologies to the APPG) is a promising start - hopefully whoever it is that's lobbying him will keep at it...
     
  16. taniaaust1

    taniaaust1 Senior Member

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    I hope that others will contact him too and ask him to ask other questions and not leave it to maybe just one person out there pushing him to do so
     
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  17. Stewart

    Stewart Senior Member

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    Well, he's the MP for Cheltenham so if any of his constituents are browsing this board they could contact him to thank him for his interest. And hopefully one of the ME charities will get in touch to follow up on his question, if they aren't in contact with him already.
     
  18. sarah darwins

    sarah darwins I told you I was ill

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    I know what you mean, and partly agree. But it also doesn't help us to be naive.

    It's important to know that this kind of Q&A is a standard part of the mechanism by which UK governments go about not addressing challenging problems, regardless of the harm being done. I stand by what I said.

    However, Stewart is right: anyone in his constituency could very helpfully now ask him to follow up on this. Whether his question came from a sincere place or not, he now has some obligation to follow through (but might need some nudging).
     
  19. TiredSam

    TiredSam The wise nematode hibernates

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    Say no more squire ;)
     
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  20. sarah darwins

    sarah darwins I told you I was ill

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    Heh. Can't get away from it now.

    Anyway, to keep @taniaaust1 happy I've written to Mr Chalk myself. I told him "Nice start, now pull your finger out and do much more". Actually I didn't put it quite like that, but you get the picture.
     

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