Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

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

    Messages:
    768
    Likes:
    672
    U.K
    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

    Messages:
    4,349
    Likes:
    4,429
    London
    Done

    Thanks for posting that
     
    Seanko and Bob like this.
  3. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,385
    Scotland
  4. bertiedog

    bertiedog Senior Member

    Messages:
    1,015
    Likes:
    1,404
    South East England, UK
    I have just completed the form asking for biomedical research into ME/CFS.

    Pam
     
    Jenny TipsforME, Seanko and Bob like this.
  5. halcyon

    halcyon Senior Member

    Messages:
    2,318
    Likes:
    5,428
    Can us yankees fill it out as well?
     
  6. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,949
    England (south coast)
    I haven't seen anything to say you can't. So, yes please. :)
     
    halcyon likes this.
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,911
    Likes:
    3,563
    Somewhere near Glasgow, Scotland
    Wesselybastarditis
    :p
     
  8. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,949
    England (south coast)
    lol, Is that the comment that you submitted, silverblade? I wonder if they will categorize it and respond to it? ;)
     
    Apple, Valentijn and SilverbladeTE like this.
  9. halcyon

    halcyon Senior Member

    Messages:
    2,318
    Likes:
    5,428
    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.
     
    SOC likes this.
  10. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,911
    Likes:
    3,563
    Somewhere near Glasgow, Scotland
    "Tempting....but, no!" :p

    [​IMG]
     
    Valentijn likes this.
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,835
    So you're really Mad Martigan ... everything makes sense now! :rofl:
     
    SilverbladeTE likes this.
  12. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,911
    Likes:
    3,563
    Somewhere near Glasgow, Scotland
    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

    Messages:
    119
    Likes:
    94
    Swindon, UK
    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.
     
    Jenny TipsforME likes this.
  14. Apple

    Apple Senior Member

    Messages:
    213
    Likes:
    677
    UK
    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

    Messages:
    119
    Likes:
    94
    Swindon, UK
    @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
     

See more popular forum discussions.

Share This Page