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Norwich centre for ME sufferers planned (Dr Ian Gibson)

Discussion in 'General ME/CFS News' started by V99, Aug 3, 2010.

  1. V99

    V99

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    http://www.edp24.co.uk/content/edp24/news/story.aspx?brand=EDPOnline&category=NewsSplash&tBrand=EDPOnline&tCategory=xDefault&itemid=NOED02%20Aug%202010%2021%3A42%3A06%3A493
     
  2. garcia

    garcia Aristocrat Extraordinaire

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    Wow. If this was in London and not Norwich I would be dancing a jig. But still wow.
     
  3. V99

    V99

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    And Invest in ME are involved. Sounds brilliant. Nope it happens.

    Just one decent centre in the UK would change everything.
     
  4. Sasha

    Sasha Fine, thank you

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    Wherever in the UK it was, it would set the standard nationally for treatment. I really hope this comes off! 150k sounds like a very small amount to run such a thing, though. I wonder where the money would be coming from.
     
  5. Enid

    Enid Senior Member

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    Delighted to hear and please can we visit from Kent. Iime suffers and carers all really keep abreast with latest findings and treatments, can't go wrong.
     
  6. Bob

    Bob

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    Thanks for this info V99... I think that this is something for those of us in the UK to keep an eye on... If Invest in ME is involved, then it's going to be something very interesting that they are setting up...

    Here's a link to the Invest in ME webpage about it:
    http://www.investinme.org/Research - ME Institute.htm
     
  7. Sunshine

    Sunshine Senior Member

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    If ME was shifted into immunology departments by this proposed Norwich centre, the NHS would refuse that as ME is part of the NHS's pet plan of the biospychosocial disorder CFS/ME treated with CBT, graded activity and counselling. (CFS researcher, Dr Kerr attempted to give ME patients access to a dedicated rheumatologist for ME and his clinic was shut down before it opened around 2007).

    The NHS will not allow an ME clinic that treats people with immune drugs (as the WPI will) as immunology investigations and treatments are prohibited under the NICE 2009 guidelines for CFS/ME patients.
    Which explains how ME patients are prohibited access to a hospital under this plan via the comment.................

    There is a long way to go, before ME patients are no longer seen as lepers by the National Health Service (NHS) in the UK. Dr Gibson will have to make this ME clinic invisible to the general public as otherwise people will talk, and ask why their NHS hospital doesn't have a biomedical treatment service for ME as the proposed clinic in Norwhich would. CFS/ME is stated as treatable by the NHS with harmful therapies and Dr Gibson's proposal is a spanner in the works for the psychiatric profession's claim 80% of severe patients improve.
     
  8. Frank

    Frank Senior Member

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    I have the same concerns as Sunshine. Maybe someone can ask Invest in ME
     
  9. Bob

    Bob

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    Hi Sunshine, you've explained the NHS's, NICE's and the MRC's position on ME very well, as they all have the same psychological approach to ME... and, unfortunately, it doesn't look like their attitude is going to change in a hurry.

    The article about the Norwich centre says that Invest in ME will be overseeing the campaigning for ongoing fundraising for the centre "to the tune of 150,000 a year", so maybe this clinic is going to be a private scheme, without the involvement of the NHS.

    Invest in ME are used to dealing with the corruption of the authorities in the UK, which is exactly why they were set up in the first place, so they won't easily be deterred by a negative reaction from the NHS. I don't know if NICE can interfere in private medicine in the same way that they have a hold over the NHS. And the MRC can't block private funding for biomedical research into ME, they only oversee public funding. So it looks like Invest in ME might be taking a leaf out of the WPI's book, and going it alone with private funding.
     
  10. Bob

    Bob

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    It looks like I'm wrong about this being a totally private scheme...
    I've just read Invest in ME's webpage, and it looks like they do have some NHS support for the scheme:
    http://www.investinme.org/Research - ME Institute.htm

    This is interesting... They intend to use the Canadian Consensus Criteria, which is going to be rather controversial in the UK...

    And this is also interesting, regarding the WPI's support...

     
  11. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    [...]


    I would suggest that anyone with an interest in this issue downloads the documents on the Invest in ME website.

    Invest in ME had been fundraising for a proposed collaboration XMRV study by Dr Jonathan Kerr and Dr Amalok Bansal. This fundraising effort (shared with ME Solutions to whom Dr Bansal is Medical Adviser and to whom Vivienne Parry is a Patron) was shelved when Dr Kerr pulled out of XMRV related research.

    It is not known how much money had already been raised but Invest in ME contacted those who had already made donations and gave them the option of either a refund of their donation or that their dontation would be offered to WPI to assist with the UK collection of blood samples. Invest in ME reported that all who had already made donations for the proposed Kerr/Bansal study opted for their donation to be forwared to the WPI for this stated purpose.

    It is my understanding that Invest in ME has no involvement otherwise with the WPI blood draws.

    I am not alone in being somewhat cautious about proposed initiatives that have the support and involvement of former MP, Dr Ian Gibson, now in his early 70s.

    Not everyone welcomed the unofficial "Gibson Inquiry" and the uncorrected report e-published in October 2006, that resulted out of it nor the way that Dr Gibson and his panel undertook this inquiry, which was a personal project not a Parliamentary inquiry or report.

    You can read the ONE CLICK report on the "Gibson Inquiry" here:

    http://www.theoneclickgroup.co.uk/d...Click Group Report - The Gibson Inquiry .pdf


    To the best of my knowledge, Invest in ME has undertaken no national consultation over this proposal, which is still at a tentative "discussions" stage.
     
  12. Bob

    Bob

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    Hi Suzy,

    Are you expressing an opinion, or making a particular point in the following passage?
    I'm trying to work out if you are expressing a view about Invest in ME?
    Or are you just imparting impartial information?...



    I hope that I can reassure you that Invest in ME are adamantly opposed to the NICE guidelines, and the psychosocial model of ME. In my opinion, Invest in ME are one of the best ME organisations that we've got in the UK. They stick to their principles of promoting biomedical research into ME, and they reject any involvement with organisations which have signed up to the NICE guidelines, or which promote CBT or any other psychological approaches to treating ME.

    With regards to the Gibson report, maybe Dr Gibson was shackled by being chair of a committee, whereas, working with Invest in ME in a personal capacity, might enable him to act more according to his own personal beliefs.

    There has always been controversy relating to the parliamentary committees for ME, but I believe that Dr Gibson did a lot of good work in raising the profile of ME in the UK, even if we don't agree with everything that the committee reported. I've always thought that Dr Gibson was motivated by honesty and good will. And he definitely worked very hard, voluntarily, without reward.


    I'm not quite sure what point you are making here, if any?... This is a local project being set up by local organisations and individuals, so why would they consult on a national level? And who would they consult? NICE? I'd definitely rather trust this one to Invest in ME. I don't think that the WPI consulted nationally when they set up their institute... If they did then it probably wouldn't have been set up at all.
     

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