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UK House of Lords/ House of Commons Questions

Discussion in 'General ME/CFS news' started by Sly Saint, Nov 2, 2017.

  1. TiredSam

    TiredSam Committee Member

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    So now they hold us in such contempt that they can't even be bothered bullshitting any more?

    How rude. Go on, at least take us seriously enough to bother making something up.
     
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    It's the word recovery that's confused 'em. So many definitions to choose from.
     
  3. Barry

    Barry Senior Member (Voting Rights)

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    I think it's the full and truthful answer that's spooked them ... so they plumped for an empty and not-very-truthful answer instead. The information has to be in data that must surely be available - criminal if such data not recorded. And querying the information out of that data is hardly an intractable problem. So they are afraid to make the answer available, which I'm sure the Countess of Mar was very aware of when asking the question.
     
    Last edited: May 17, 2018
  4. MeSci

    MeSci Senior Member (Voting Rights)

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    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145357/

    Written question 145357: Carol Monaghan 17-05-2018

    Department of Health and Social Care


    145357

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse he plans to allocate to biomedical research into Myalgic Encephalomyelitis in the current financial year.

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145356/

    Written question 145356: Carol Monaghan 17-05-2018

    Department of Health and Social Care

    145356

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into Myalgic Encephalomyelitis 2016-2017.

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145355/

    Written question 145355: Carol Monaghan 17-05-2018


    Department of Health and Social Care

    145355

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into Myalgic Encephalomyelitis 2015-2016.

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145354/

    Written question 145354: Carol Monaghan 17-05-2018

    Department of Health and Social Care


    145354

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into Myalgic Encephalomyelitis 2014-2015.

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145353/


    Written question 145353: Carol Monaghan 17-05-2018


    Department of Health and Social Care


    145353

    To ask the Secretary of State for Health and Social Care, when he plans to respond to the letter from the hon. Member for Glasgow North West dated 25 April 2018 on myalgic encephalomyelitis.
     
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  5. MeSci

    MeSci Senior Member (Voting Rights)

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    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-21/146296/

    Carol Monaghan

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into myalgic encephalomyelitis in 2013-2014 [146296]

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-21/146297/

    Carol Monaghan

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into myalgic encephalomyelitis in 2012-2013 [146297].

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-21/146298/

    Carol Monaghan

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into myalgic encephalomyelitis in 2011-2012 [146298].

    https://www.parliament.uk/business/...s/written-question/Commons/2018-05-21/146299/

    Carol Monaghan

    To ask the Secretary of State for Health and Social Care, how much funding from the public purse was allocated to biomedical research into myalgic encephalomyelitis in 2010-2011 [146299].
     
  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    @MeSci I really like all of Carol Monaghan’s questions!
     
  7. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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  8. MeSci

    MeSci Senior Member (Voting Rights)

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  9. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    adambeyoncelowe, Inara, MeSci and 4 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Reply to Carol Monaghans questions:

    (sorry the tables went a bit squiffy.)

    eta: am not sure if all of this is 'biomedical' as we understand it(?)

    eta2: available on Hansard https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145357/
     
    Last edited: May 24, 2018
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  11. Trish

    Trish Moderator Staff Member

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    @Sly Saint, can you give the link to the reply you've just posted, I can't find it.
     
  12. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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  13. Andy

    Andy Committee Member

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  14. Andy

    Andy Committee Member

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    Yeah, I'd agree. I call bullshit on those figures, I bet most of them are behavioural research.
     
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  15. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    My thoughts are that if these figures “ allows high-quality clinical research funded by charities, research funders and life-sciences industry to be undertaken throughout the National Health Service.”

    “ .....The funding for this research came from a combination of the NIHR, the Medical Research Council (MRC) and medical research charities.”

    Then, if our UK charities could provide the figures of how much they have invested in biomedical research during the specified years, and how much came from “research funders” then surely that would show us roughly how much was provided by Govt coffers.

    Does that make sense, or am I just in a brain fog moment?

    Edit - sorry @Andy are my posts cluttering up this thread? Please feel free to move them into a new discussion thread.
    Edit 2 - spelling
     
    Last edited: May 24, 2018
  16. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    21.7.2016 I wrote to my MP who sought a reply (from ??? Dept) and received the response

    “As you are aware, research into CFS/ME is a priority area for the Medical Research Council (MRC). In 2011, £1.6 million was awarded to support five research grants following a call for proposals and a further £1.2 million was awarded in 2013. I know that the MRC are also encouraging applications and proposals for certain other areas of work.”

    So we could work out as £7.8M total funding in ? 30 years?????

    Perhaps @Graham (Hi again, ) can assist as our “stats” man?

    Going leave you with these thoughts and have a brain rest.....
     
  17. Graham

    Graham Senior Member (Voting Rights)

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    I'm not really a stats man, but from my calculations, if you add up all the grants given from the three main funders, the MRC, NIHR (virtually none, except for just recently funding Crawley), and Wellcome (virtually nothing), I'd be surprised if it comes much above £12 million. Of that, I'd be surprised if the biomedical component of that research was much above £2 million.

    All of that drops away into insignificance when you add in the $5 or $6 million per year set aside by NIH in America, most of which did end up funding some form of CFS, even if a proportion of that was just on fatigue.

    According to my estimates, I'd be surprised if the whole amount spent on biomedical research into ME over the last 40 years was much more than a week's current research spending on HIV/AIDS. Tom thinks that I should say a fortnight's spending to be on the safe side, because all of these are estimates. And that isn't counting the vast amount spent by private pharma.
     
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  18. Graham

    Graham Senior Member (Voting Rights)

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    I forgot to say that I do have databases that would allow us to work this out, but unlike NIH, the UK accounts are not presented in any way that allows you to easily see how much is spent on different conditions. That would take hours of work, and I'm not sure that it is worth doing. I'm pretty confident that my estimates are of the right order (which means £12 million could be £10 to £15 million, but unlikely to be £20 million). With figures like that, the situation is so appalling, why would we need an exact breakdown? Even the current increase in spending by the NIH is trivial.

    Perhaps some of you remember the bubbles video for 2011. I did do an update for 2017. Here are the final scenes: you will be truly stunned by the difference.


    2011.jpg



    2017.jpg
     
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  19. MeSci

    MeSci Senior Member (Voting Rights)

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    Perhaps it would be helpful to see how many people are off work sick with the different conditions?

    On second thoughts - it could be used against us.
     
    Inara and Invisible Woman like this.
  20. TiredSam

    TiredSam Committee Member

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    What's the betting someone says behavioural research is biomedical research and starts blabbering on about cartesian dualism?
     

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