1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Whittemore Peterson NEWS!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by leaves, Feb 8, 2010.

  1. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    38
    Bully beef

    I think it is unrealistic and undesirable at this point that the WPI have any medical media rep outside of the US. There are different politics going on in different places and they could never keep up, and you don't want to end up with some crackpot coming out with crazy statements on behalf of the WPI.

    It makes sense for them to focus on the US media as that is where they will get most publicity anyway, and it is possible that Dr. Donnica will occassionally be interviewed via video link in other countries (hopefully that won't have her running for the hills if she sees this!). From our (European) point of view, what the WPI will be doing for us, is research and then it is up to us to use this research as it comes out.

    Is there any evidence that Chris Steele is any good on ME? Just had a quick look, and this this page isn't bad I would not be happy with this sentence:

    "Rest and adequate sleep is essential in the treatment of this disease, with a recovery programme involving gradually increasing amounts of daily exertion. At present, there is no 'cure' for ME, and many patients can take a long time to recover."

    http://health.virginmedia.com/post-viral-fatigue-syndrome.htm

    He may be sympathetic and not hardline wessely-school, but this doesn't mean he has anything other than a cursory knowledge of ME. Edit: He has done some sympathetic coveage of ME but I am not convinced he would have the knowledge to be a spokesperson, and there is every chance he would know this himself. Also with his job it would be a potential conflict of interest so he probably wouldn't be able to do it.

    I think it is important not to look to celebreties too much, especially if they don't have some family connection (as Dr. Donnica has). Even good doctors can come out with some awful rubbish unless they have it themseles or a close family member has it. Also most doctors knowledge base is normally so low in terms of research (unlike people directly involved in charities, for example) that they wouldn't know how to argue a case with some sneaky but sharpe Wessely school person.

    And the celebrity thing has been a bit of a fiasco in the UK (Barbara Windsor, Esther Ranson, the canoeist etc.) so I always feel slightly alarmed when people try to go down that route,
    Orla
     
  2. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    I'm really pleased about this, what a great step forward for the WPI and of course, for us.
     
  3. tino_3

    tino_3

    Messages:
    3
    Likes:
    0
    Couldnt be a better spokesperson than Dr.Donnica!
    WPI really think and act in a fantastic way, both research and PR/information.
    When they succeed to change the opinion and knowledge in the US, it also affect us in a positive way in Europe.
     
  4. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    260
    I could not agree with your post more! :)


     
  5. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I was wondering if the TV presenter & doctor, David Bull might work. I heard him once on a chat show, speaking briefly on ME. He was very adamant of the severity of the disease.
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    220
    Clay, Alabama
    Celebrity can be good or not. Cher had some baggage, but she has over the top notoriety.

    Michael J. Fox has done a great job for Parkinson's.

    The other guy who got hurt and is paralyzed has been a great spokesperson for that problem.

    Tina
     

See more popular forum discussions.

Share This Page