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Manchester Evening News: Bedbound and in unimaginable pain, watching my daughter waste away and die from ME was torture

Discussion in 'General ME/CFS news' started by Kalliope, Apr 1, 2018.

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  1. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Invisible Woman, Apr 2, 2018
    #21
    adambeyoncelowe and Cinders66 like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Apr 2, 2018
    #22
    adambeyoncelowe, Sly Saint, EzzieD and 8 others like this.
  3. Guest 102

    Guest 102 Guest

    I honestly think it's hard to know what is best to do, ignore him or challenge him, I would happily dismiss him as a crackpot but he first came to my attention a good while back when Sharpe thanked him on Twitter for trying to defend the 'irrational criticism' of the PACE trial:

    https://twitter.com/user/status/784317201809481728


    So there is a wee network going on there.

    And Henrik does display a callousness that is hard to ignore, hard just to dismiss as zealotry. But does he really matter in the scheme of things?

    I do though fully understand why some engage with him directly, he seems to enjoy actually goading. Or maybe English not being first language makes him seem more stilted/cold, not that I am defending him one jot, of course.
     
    Last edited by a moderator: Apr 2, 2018
    Guest 102, Apr 2, 2018
    #23
    adambeyoncelowe, Sean, Cheshire and 7 others like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    One day, I really hope it comes soon, that man will regret every syllable in those tweets.

    I think he's so awful he may end up actually helping our cause.
     
    Invisible Woman, Apr 2, 2018
    #24
    Sean, MEMarge, TiredSam and 8 others like this.
  5. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    Marian is right. It almost killed me about twenty years ago. If I had not taken my fate in my own hands by a calculated gamble I would have died long ago
     
    lansbergen, Apr 2, 2018
    #25
    adambeyoncelowe, MEMarge, Kalliope and 5 others like this.
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Still just two. Looks like intelligent discussion not wanted. Mine were critical of the awful way the mail ended it by saying patient activists and some Drs believe it's physical etc. Still undermining us. I'm not surprised they didn't print it but can't believe no one else wrote in.
     
    Cinders66, Apr 3, 2018
    #26
    adambeyoncelowe, alktipping, mango and 3 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Apr 3, 2018
    #27
    EzzieD, ukxmrv, Trish and 8 others like this.
  8. TiredSam

    TiredSam Committee Member

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    I was thinking that. He's a pantomime villain making it clear to everyone how bad this shit is. Glad to see Michael Sharpe showing his usual good judgement and associating himself. I'm starting to like Twitter, it's rather good at succinctly showing people up for what they are.
     
    TiredSam, Apr 3, 2018
    #28
    andypants, Snow Leopard, Moosie and 16 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Apr 4, 2018
    #29
    MEMarge, Jan, Barry and 10 others like this.
  10. JohnM

    JohnM Established Member (Voting Rights)

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    53
    Could someone who uses Twitter let Hillary Johnson know that Merryn died on the 23rd April last year, i.e. 2017? A factual correction would not detract from sentiments expressed, and which I share.

    Wishing everyone improved health and every happiness. John :)

    ETA to clarify meaning in last sentence.
     
    Last edited: Apr 4, 2018
    JohnM, Apr 4, 2018
    #30
    Jan, TiredSam, MEMarge and 2 others like this.
  11. Andy

    Andy Committee Member

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    Andy, Apr 4, 2018
    #31
    Jan, Barry, MEMarge and 12 others like this.
  12. mango

    mango Senior Member (Voting Rights)

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    This Swedish article (published today) is based on the UK articles above.

    Expressen: Mamman vill att alla ska se bilderna på dottern
    https://www.expressen.se/omtalat/mamman-vill-att-alla-ska-se-bilderna-pa-sin-doende-dotter-/

    Google Translate, English ("The mother wants everyone to see the pictures on her dying daughter")
    https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=https://www.expressen.se/omtalat/mamman-vill-att-alla-ska-se-bilderna-pa-sin-doende-dotter-/&edit-text=
     
    mango, Apr 4, 2018
    #32
    Jan, Indigophoton, Kalliope and 9 others like this.
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Apr 4, 2018
    #33
    Jan, Barry, MEMarge and 9 others like this.
  14. Andy

    Andy Committee Member

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    Andy, Apr 4, 2018
    #34
    Jan, dangermouse, adambeyoncelowe and 6 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I'm not on FB but gather Merryn Crofts family have expressed some concerns on AfME FB page (?)

    eta:
    there is no moderator note to explain that this and the next few posts were moved here. I originally posted this on the AfME thread.
     
    Last edited: Apr 5, 2018
    Sly Saint, Apr 5, 2018
    #35
    JohnM and adambeyoncelowe like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    “I am Merryn’s sister. Considering Action For ME have not responded to my message, I want to make this very clear. We saw this earlier today. Action For ME have never had anything to do with us or with Merryn. We have never communicated with them. Nor (in response to some of the comments worryingly in this thread) do we support anything to do with the Lightning Process, which quite frankly, is utterly appalling and exceptionally dangerous for the ME community. Not to mention highly unethical. For Action For ME to be speaking to journalists about her story, as they have stated above, I am unsure why this is as they never met or corresponded with her, or us as a family.

    This is the message I sent earlier which they have failed to reply to:
    Hi,

    I’ve just seen your status about Merryn Crofts. I’m her sister and thank you so much for sharing one of the articles that has circulated about her. We are quite blown away by the response her story has had which can only be a good thing for ME!

    However, we was just wondering as to what you meant where it states that Action for ME have been speaking with journalists regarding raising awareness of her story. We are just unsure what you mean by this as we have never had any communication with yourselves about Merryn, and Merryn never had any personal communication with yourselves, so we are unsure of how you are aware of her full story?

    Many thanks,
    Amy Williams”
     
    NelliePledge, Apr 5, 2018
    #36
    sea, Joh, Moosie and 17 others like this.
  17. Andy

    Andy Committee Member

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    And from what I can see Sonya seems to have addressed them.
     
    Andy, Apr 5, 2018
    #37
    sea, dangermouse and adambeyoncelowe like this.
  18. Andy

    Andy Committee Member

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    Screen Shot 2018-04-05 at 11.13.41.png
     
    Andy, Apr 5, 2018
    #38
    MEMarge, Moosie, dangermouse and 7 others like this.
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Still, it's all rather tacky, isn't it?
     
    adambeyoncelowe, Apr 5, 2018
    #39
    mango, Allele, Barry and 7 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

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    And the posts about Lightnng Process are still there which isn’t just tacky it’s distressing to the family
     
    NelliePledge, Apr 5, 2018
    #40
    Snow Leopard, mango, Barry and 8 others like this.
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