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OMF update: OMF Ambassador - Stuart Murdoch

Discussion in 'General ME/CFS News' started by Kalliope, Sep 13, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    What wonderful news! :party::thumbup:

    OMF Ambassador - Stuart Murdoch

    “The great thing about Open Medicine Foundation is everything they find out, they put that out to the world for everybody to see, and it’s through this collaboration and open sharing of ideas that I think the solution will be found.” Stuart Murdoch, Belle and Sebastian

     
  2. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Has he chronic Fatigue or M.E....wish syndrome could at least be added to chronic Fatigue.....as we all know chronic Fatigue is not M.E. I'm not sure about this being a super idea.
     
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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I am not sure I understand. He has ME, hasn't he?

    In this recent interview with Murdoch, he says he got sick with ME/CFS in 1990.
     
  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Well I wish he would call it M.E then and not chronic Fatigue!!
     
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I still don't understand, I'm afraid. Could you please guide me to where he calls ME chronic fatigue?
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Oh, it's in the video! Sorry, I didn't catch it first time I saw it. As I understood it he talks about chronic fatigue as a symptom, and ME as the name of the disease, so no referral to the disease as chronic fatigue. :)

    Edit to add: And on wikipedia it says he came down with Myalgic Encephalomyelitis.
    https://en.wikipedia.org/wiki/Stuart_Murdoch_(musician)
     
  7. Adrian

    Adrian Administrator

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    When all the doctors keep saying chronic fatigue then its easy to slip into that language.
     
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  8. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Maybe....I know I'm allergic to the term chronic fatigue...and no way wud I ever use it as it's the most feeble description of such a horrible illness.
     
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  9. Joh

    Joh Senior Member (Voting Rights)

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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Oh, he does say "chronic fatigue" not "chronic fatigue syndrome", and towards the end he talks about exercise.. :(
     
  11. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Ugh.

    Don't know this guy from Adam, can't be bothered to google his name, but I take it he's some sort of celebrity as he was on CNN and mentioned his 'band'.

    He started the first video apologizing for not being clear on his CNN interview.

    Being a celebrity and an OMF Ambassador, he has the potential to have a big impact. Based on those 2 videos, I'm not sure if he'll have a positive impact. And I wonder what the CNN interview will be like if he's already pre-apologizing. Gulp.

    OMF needs to have him work with a communications consultant to get his messaging and language on point. And no more interviews or videos until.
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Yes if people are going to be ambassadors for an organisation and advocate for fellow patients the organisation should give them a thorough briefing on the politics. Just because you have an illness doesn’t mean you have a detailed grasp of anything other than your own experience.
     
  13. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I didn't have a good feeling about him from day 1!!!
     
  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I don’t have a bad feeling I just think being an advocate is different from being a musician and like any role you have to learn how to do it. The OMF should be facilitating this. There are people he could learn from like @Tom Kindlon and @Emsho
     
  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I'm pleased that he is speaking out.

    Yes, it would be better if he didn't conflate CF and CFS, but let's give him a chance.
     
  16. andypants

    andypants Senior Member (Voting Rights)

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    I agree with @MEMarge , at least he is trying to do something. This is his very first interview as a spokesperson, so let’s give him a chance to figure this out. He hasn’t been very involved with the community for long and it can be a steep learning curve just joining the conversation.

    That being said I agree OMF should have briefed him better beforehand. Someone obviously did afterwards, given that he felt the need to prepare the community for that it probably wasn’t perfect.

    I’m probably biased because I love Belle & Sebastian.
     
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Here's a post of mine from 18 years ago in case it is of use to anyone:
    I don't want to contact him myself. I hope anyone who does also thanks him for speaking up if they are making suggestions to him.
     
  18. Joh

    Joh Senior Member (Voting Rights)

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    Stuart Murdoch also spoke at #MillionsMissing in Scotland this year:

     
  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Amw66 were you at this/do you know what was said?

    Overall this #MM event seemed to have been excellent.
     
  20. Trish

    Trish Moderator Staff Member

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    From watching those two short video clips that Stuart Murdoch put on Twitter my impression was that he was really struggling with brain fog. He was clearly quite distressed that he had got it wrong in some way in his interview. He may be very well briefed on ME, but having a bad day and not conveyed what he meant to.

    I think it's often a bad idea to ask people who have ME and who are also 'celebrities' to act as spokespeople for ME unless they are really up to speed on ME and articulate. Otherwise all they can do is talk about their own experience and can end up spreading misunderstanding.

    If I blame anyone for this sort of situation it is the organisation that asks them to be an ambassador, not the sick individual who is trying to do their best.
     

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