Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

Discussion in 'General ME/CFS News' started by AndyPR, May 10, 2017.

  1. AndyPR

    AndyPR Senior Member

    http://www.edinburghnews.scotsman.c...-why-are-you-ignoring-me-ms-robison-1-4441060

    Again, good job @emsho :)
     
    Cohen2, Cinders66, suseq and 21 others like this.
  2. trishrhymes

    trishrhymes Senior Member

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    That is a brilliant article. Well done.

    I particularly like that you place the blame squarely on Simon Wessely.
     
  3. TiredSam

    TiredSam The wise nematode hibernates

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    Germany
    To describe the complicated issues around ME in simple terms that a lay-reader can understand is no mean feat. Well done on both articles :thumbsup:
     
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  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    @emsho, "Get your finger out" :rofl: :thumbsup:
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Maybe this can gain momentum to isolate London (the (B)PS home) by having the rest of the UK share a truthful version of the story of people with ME.
    Wales' turn next. . .
     
    Last edited: May 10, 2017
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Regional press and TV seems to be the way to go, under the SMC radar :)
     
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  7. Tyto alba

    Tyto alba

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    The email given at the very end of the article is emma@meaction.ne - I'm guessing this is probably an error and should be emma@meaction.net? If so can anyone alert them to this?
     
  8. emsho

    emsho

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    Cheers guys! My mum and I worked really hard on press release so glad it's paying off.
    The fab journalist who wrote this was so enraged at the behaviour of W and co he's now helping with the protest!

    I'm a bit exhausted but looking forward to the protest on Friday. Don't know if you've seen these 2?
    There's an article in the Daily Record about C.B.T/G.E.T
    http://www.dailyrecord.co.uk/news/real-life/crippled-me-doctors-say-its-10388830

    and in the Scotland on Sunday:
    http://www.scotsman.com/news/me-sufferers-seek-help-to-defeat-burden-of-chronic-fatigue-1-4439148

    Can you tell I didn't enjoy having my pic taken?

    I'm pooped but will be talking on Radio Scotland on Friday morning at 10:30... All I can say is I'll do my best!
    Big thanks to the P.R community, your support when I initially joined and talked about G.E.T was so helpful and made it much easier to talk about it!
     
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  9. dangermouse

    dangermouse Senior Member

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    You are doing an amazing job, well done and thank you so much, I know how much it will have taken out of you. :hug:
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Wessely is an evil parasite, this should never EVER be overlooked or forgotten
    It is no accident, it is wilfully chosen on his part and for that crime he should be vilified and punished draconianly.
    Being nice gets you nowhere with manipulative, evil scum, letting them away with it is cowardice and lets it happen again and again.
    So yes he and the others should be called out whenever it gets aired
     
  11. Solstice

    Solstice Senior Member

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    That bit made me chuckle. Thanks for getting the story out.
     
  12. emsho

    emsho

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  13. AndyPR

    AndyPR Senior Member

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  14. suseq

    suseq

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    Brilliant advocacy. Thank you.
     
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  15. slysaint

    slysaint Senior Member

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  16. trishrhymes

    trishrhymes Senior Member

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    Hi @emsho , you have done a fantastic job with this. Congratulations and thank you.
     
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  17. Cinders66

    Cinders66 Senior Member

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    Well done Emma :) some great articles, look forward to your protests too!
    Your article and points needing action was mentioned in the Scottish parliament debate today :)
    Just a note before th protests in Scotland, the Scottish health minister responded to the funding request with the "happy to receive applications" line we hear from the MRC in England etc. The problem with this open to proposals approach is it simply doesn't work for misrepresented/stigmatised illness where no one rushes forward as we have seen, despite CFS/ME being a highlighted area in UK for several years. The illness has a naf name, unhelpful broad criteria and is viewed as primarily caused or cured by behaviour by the medical profession so a more proactive approach to funding is required AFAIC, unless people are happy to wait for the trickle down effect of increased education and small drops of research findings to stimulate interest. Rituximab results etc might be a game changer.... I don't know how long it would take to stimulate more research purely through rebranding/ re education and I don't see a wholesale rebranding on the cards for some time either so I think offering up ring-fenced money to encourage researchers, as Norway have done & which worked 2011 in the UK, is appropriate to ask for.
     
    Last edited: May 11, 2017
  18. emsho

    emsho

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    @Cinders66, we've been discussing how to respond to this- ring fencing money is an excellent suggestion, thank you!
     

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