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California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
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Daily Mail poll: "Do you think ME is a genuine illness"

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jan 6, 2010.

  1. Dolphin

    Dolphin Senior Member

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  2. Esther12

    Esther12 Senior Member

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    lol.

    The Daily Mail's previously been quite good with it's CFS/ME coverage. Oh well. We'll finally have a definitive answer!
  3. Katie

    Katie Guest

    Oh god, this is horrific. The title of the article "British Experts Say ME Virus is a Myth" I've voted, it is just the Daily Mail a sh*terag as my media guru Nick Davies says (former Guardian journalist, now freelance and a very clever and dedicated man), I don't want to say the Daily Mail holds much weight but this is how it's been for a while, this study has just poked the old spotlight on us again "Are you really ill? Get back to work you sponging, benefit robbing, malingerer". It's the media machine in action, Wessely's study had to be first out to get this response and he's succeeded.
  4. Orla

    Orla Senior Member

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    The poll has been removed from the daily mail following someone with ME complaining about it (she rang up).

    Orla
  5. Dolphin

    Dolphin Senior Member

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    Thanks for letting us know.
    Well done to whoever rang up.
  6. Samuel

    Samuel Bedbound with NO DOCTOR

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    Wow! That is advocacy!

    A single phone call reduces suffering and death.

    A lesson for us all.
  7. anne

    anne Guest

    That must have been some call.
  8. Katie

    Katie Guest

    I want to hug whoever made that call! If you're reading this our activist phonecaller then your have my applause and thanks.
  9. dipic

    dipic Senior Member

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    Good on whoever called in. What an irresponsible thing for the Daily Mail to do (not that I can honestly say I expected any less.)
  10. Uno

    Uno

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    Brighton, United Kingdom
    Hi guys

    It was me who rang in:D Thanks for all your kind words. Thought the Mail could do with a kick up the backside...actually spoke to one of the Editors and am speaking to the actual Journalist who wrote the article tommorow. I used to work in PR and Marketing so pulled a few strings. If anyone wants to put a question forward let me know xx
  11. anne

    anne Guest

    You are BRILLIANT. What did you say?
  12. garcia

    garcia Aristocrat Extraordinaire

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    Brilliant Uno! No questions, but a few comments:

    "But lack of a clear cause has led to scepticism that it is a genuine illness." - Most chronic diseases don't have a clear cause. MS. Heart disease. Cancer. What is the "clear cause" of those? The reason there is scepticism about ME/CFS is because there is a large amount of money at stake.

    "Pinning it on a virus would have removed the stigma" - No one is trying to "pin" this disease on anything! Its very sloppy wording. Also I expect the stigma of this disease to rise sharply if a retroviral cause is found. However that is neither here nor there. All that matters right now is the science.

    "The British experts say they are 'one thousand per cent' confident in their result." - point out that such confidence is completely unscientific. Unless one has a vested interest in the result.

    "XMRV, which is usually found in mice" - technically not true, but a minor point
  13. JillBohr

    JillBohr Senior Member

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    Uno - Another brilliant from me and since I am American I will also add that you are totally awesome!
  14. garcia

    garcia Aristocrat Extraordinaire

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    London, UK
  15. Victoria

    Victoria Senior Member

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    At the risk of sounding like a "broken record", Uno,

    Your phone call must have been the ultimate call of "brilliance".

    Well done.

    Perhaps you'll consider making more of those type of calls across the rest of the world.......millions of sufferers will be overwhelmingly grateful.
  16. Katie

    Katie Guest


    ((((((((((((((Uno)))))))))))))))))) <- That's the hug I promised you!


    There's one corking thing you can send to them and it should perk up interest as it really lays into the paper - the WPI response to the study, it's brilliant! There's also Vernon's reply to which is rather spiffing. The controversy is there already written for them, it's a rushed and shoddy non-attempt at replication which needs a good airing out in the media and the Americans have the personality to do it.

    Thank you so much for getting on to them, my heart sank when I saw the poll and it's truely been lifted once more. Stick around, we need folk like you on board!
  17. Koan

    Koan Be the change.

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    :balloons::balloons::balloons: :victory: UNO:victory::balloons::balloons::balloons:


    Many thanks to you!
  18. mockturtle

    mockturtle Guest

    does anyone have a screenshot of this?
  19. Nina

    Nina Senior Member

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    Thank you so much Uno! You're brilliant indeed! I saw the post and voted "yes", thinking that was all I could do... But you did the only right thing (and did it very well obviously!)

    Big hug from Germany!!
  20. Min

    Min Senior Member

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    UK

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