1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 25th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Merryn Crofts - media and inquest

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

Tags:
Page 1 of 8
  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,593
    Location:
    Norway
    This thread has been split in order to create an In Memory thread for Merryn.

    To leave tributes to Merryn please go to:
    https://www.s4me.info/threads/in-memory-of-merryn-croft.3302/

    This thread remains here to discuss media coverage


    :cry:

    Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture

    A mum has told of her ‘torture’ at watching her beautiful daughter waste away as she battled a disease some people refuse to believe exists.
    Merryn Crofts died on May 23 last year, 10 days after her 21st birthday.
    She weighed less than six stone and had spent the last three years of her life totally bed-bound, in almost unimaginable pain.

    Merryn had severe myalgic encephalomyelitis - or ME - a neurological illness which affects up to 17 million people worldwide, according to some estimates.
    But many think the condition is not real, even within the medical profession.

    Now, Merryn’s family have taken the brave decision to speak about her life and death in a bid to raise awareness of the crippling disease.
     
    Last edited by a moderator: Apr 2, 2018
    Kalliope, Apr 1, 2018
    #1
    BeautifulDay, emma, Little Bluestem and 38 others like this.
  2. Andy

    Andy Committee Member

    Messages:
    23,109
    Location:
    Hampshire, UK
     
    Andy, Apr 1, 2018
    #2
    Jan, Binkie4, ukxmrv and 22 others like this.
  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,431
    Location:
    UK
    Arnie Pye, Apr 2, 2018
    #3
    MEMarge, Chezboo, Jan and 11 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,593
    Location:
    Norway
    Kalliope, Apr 2, 2018
    #4
    arewenearlythereyet, Indigophoton, Squeezy and 3 others like this.
  5. Guest 102

    Guest 102 Guest

    Unimaginable hell for this young woman and her family, hard not to be in tears reading her story.

    I don't engage with Norwegian doctor Henrik, I did a couple of times when he first day defended PACE, but I think he is simply incapable of self-awareness and clearly doesn't mind how much he insults families of pwME with his abject nonsense. He seems rather obsessed with psychologising ME. Bizarre.
     
    Guest 102, Apr 2, 2018
    #5
    MEMarge, Hutan, Little Bluestem and 12 others like this.
  6. Sean

    Sean Moderator Staff Member

    Messages:
    8,154
    Location:
    Australia
    I encourage Henrik Vogt to go right on letting the world know of his views on these matters, in as public and undeniable a manner as possible.

    I can think of no better way for him to ultimately and decisively destroy his own credibility and reputation.

    There are few people I can find less forgiveness for in this appalling chapter of medicine than this third-rate sociopathic vulture.

    He is nothing more than a stark lesson in how little a formal education can be worth in the wrong brain.
     
    Sean, Apr 2, 2018
    #6
    MEMarge, JemPD, Hutan and 19 others like this.
  7. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

    Messages:
    155
    Just waiting for his next tweet where he comments on a story of a girl being raped by ''It is important to underscore that the girl could have worn more clothes''

    This guy is clearly a sociopath.
     
    Rick Sanchez, Apr 2, 2018
    #7
    MEMarge, Little Bluestem, Invisible Woman and 5 others like this.
  8. Frogger

    Frogger Senior Member (Voting Rights)

    Messages:
    212
    Clearly the man does not understand ME/CFS. What a terrible thing to say to PwME.
     
    Frogger, Apr 2, 2018
    #8
    MEMarge, arewenearlythereyet, Allele and 6 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,962
    Location:
    UK
    Last edited: Apr 2, 2018
    Sly Saint, Apr 2, 2018
    #9
    MEMarge, Jan, Frogger and 9 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,962
    Location:
    UK
    Sly Saint, Apr 2, 2018
    #10
    adambeyoncelowe, Chezboo, Jan and 3 others like this.
  11. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,200
    Location:
    UK
    I know it's not going to happen but I wish people would just ignore Vogt. He's digging his own hole, leave him to it. I worry that the more attention is drawn to him the more likely it is that Merryn's family and friends will be hurt by his lack of empathy. He may believe everything he says is true, but he doesn't have to say it in connection to an individual who has died.
     
    Skycloud, Apr 2, 2018
    #11
    Binkie4, MEMarge, adambeyoncelowe and 8 others like this.
  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,431
    Location:
    UK
    Arnie Pye, Apr 2, 2018
    #12
    Binkie4, MEMarge, adambeyoncelowe and 8 others like this.
  13. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,913
    Location:
    Cornwall, UK
    MeSci, Apr 2, 2018
    #13
    MEMarge, adambeyoncelowe, Invisible Woman and 1 other person like this.
  14. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,431
    Location:
    UK
    I hadn't realised that Merryn's death occurred so long ago. Perhaps it is appearing in the papers now because the parents have gone public?
     
    Arnie Pye, Apr 2, 2018
    #14
    MEMarge, adambeyoncelowe, Hutan and 1 other person like this.
  15. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,593
    Location:
    Norway
    Kalliope, Apr 2, 2018
    #15
    Binkie4, MEMarge, JemPD and 11 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,962
    Location:
    UK
    Last edited: Apr 2, 2018
    Sly Saint, Apr 2, 2018
    #16
    Binkie4, MEMarge, Little Bluestem and 11 others like this.
  17. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    It's an automatic translation site, there are more and more of these. They aren't even edited, it's pretty bad, I don't know who reads them. (eg. of bad translation: "Elle pesait moins de six kilos", she weighted less than 6 kilos, original version: She weighed less than six stone...).

    edit: and half of the time, ME is translated as "moi" (me, I).
     
    Cheshire, Apr 2, 2018
    #17
    Little Bluestem, Chezboo, Invisible Woman and 1 other person like this.
  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,232
    Cinders66, Apr 2, 2018
    #18
    Binkie4, Invisible Woman and Indigophoton like this.
  19. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,420
    My ME-hapless MP just sent me one of his aren't-I-wonderful newsletters, so I replied with a link to this article, along with the headline, byline and photo, plus a short message from me how I'm looking forward to seeing him start fighting for PwME, and not just regurgitate the party line. Lost cause no doubt, but maybe someone else in his office might read it who cares.
     
    Last edited: Apr 2, 2018
    Barry, Apr 2, 2018
    #19
    Little Bluestem, Chezboo, Joh and 6 others like this.
  20. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,420
    Barry, Apr 2, 2018
    #20
    MEMarge likes this.
Page 1 of 8

Share This Page