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NHS in the UK asking for the public to submit suggestions of illnesses to be researched

Discussion in 'General ME/CFS News' started by anniekim, Sep 5, 2015.

  1. anniekim

    anniekim Senior Member

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    The UK National Institute for Health Research, apparently only second to MRC in terms of spending power, are looking for suggestions from patients, carers and members of the public for tests and treatments that need to be researched. A great opportunity to tell them why it's vital that potential ME tests and treatments be researched.

    For those interested and well enough to write, submission is simple - it just requires answers to three questions at this link http://t.co/7DoWC1Lapp
     
  2. ukxmrv

    ukxmrv Senior Member

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    Done

    Thanks for posting that
     
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  3. Scarecrow

    Scarecrow Revolting Peasant

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  4. bertiedog

    bertiedog Senior Member

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    I have just completed the form asking for biomedical research into ME/CFS.

    Pam
     
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  5. halcyon

    halcyon Senior Member

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    Can us yankees fill it out as well?
     
  6. Bob

    Bob

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    I haven't seen anything to say you can't. So, yes please. :)
     
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  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Wesselybastarditis
    :p
     
  8. Bob

    Bob

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    lol, Is that the comment that you submitted, silverblade? I wonder if they will categorize it and respond to it? ;)
     
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  9. halcyon

    halcyon Senior Member

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    Thanks Bob, I did so. I brought attention to the following statement:
    While this statement could have been made yesterday it was actually made following a 1978 British symposium on ME. Someone diagnosed with this disease in 2015 really is no better off than someone diagnosed in 1978. There are very few major diseases where you could say the same thing.
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "Tempting....but, no!" :p

    [​IMG]
     
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  11. Valentijn

    Valentijn Senior Member

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    So you're really Mad Martigan ... everything makes sense now! :rofl:
     
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  12. SilverbladeTE

    SilverbladeTE Senior Member

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    lol!! ;)
    that scene is one of my absolute faves! :p

    "Not a woman?!.....NOT A WOMAN!"

    "Gentlemen, meet Lug!"

    :D
     
  13. Seanko

    Seanko Senior Member

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    You can find some background & discover what other people have written on the blog below.

    Help Shape research in the NHS

    The author Emily is well versed in the politics of the NHS.
     
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  14. Apple

    Apple Senior Member

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    How have people answered the 2nd question? 'What outcome should we measure?' Maybe i'm just a dimwit, but that wording is confusing to me :redface:
     
  15. Seanko

    Seanko Senior Member

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    @Apple don't worry, just brain fog,it happens to us all. There is no real right or wrong answer :)

    If your first research request os to look into studying buomarkers associated Post Exertional Malaise (PEM), the outcome could be measuring hormones after a period of activity over a few days and asking patients to fill in a questionnaire.

    The main idea is that you fill in the form asking and raise the issue of ME/CFS. In the third answer, you could mention the economic loss to the country and the cost to the NHS of untreated patients. Your own experiences are the best oens to talk about.

    Have a look at the other PR thread
    http://forums.phoenixrising.me/inde...r-is-consulting-the-public.39661/#post-637213

    & Emily Beardall's blog post for some ideas.
    Help Shape research in the NHS
     

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