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Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Nicolas the french guy, Dec 30, 2017.

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Page 4 of 7
  1. Sean

    Sean Moderator Staff Member

    Messages:
    7,213
    Location:
    Australia
    I didn't mean you specifically, just the general you, as in: one should be careful what one wishes for...
     
    Sean, Dec 31, 2017
    #61
    Luther Blissett and ladycatlover like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    2,343
    Yes, @Jonathan Edwards. Thank you for your contribution to the Buzzfeed article, and the other statements you have made in support of pwme. They are always very welcome, and I should have recognised them.

    I do remember one that was something to the effect that you are retired whereas other researchers are still dependant on the UK research system for career progression which is a concern for them. The treatment of Keith Geraghty is a case in point.

    I am wondering however why 2 UK charities are still working closely with Esther Crawley within the CMRC. I can see no reason for them to do this. The " in the tent" argument has imho produced no benefits for pwme.
     
    Binkie4, Dec 31, 2017
    #62
    ahimsa, Lidia, Valentijn and 10 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    Jen Brea is doing a fantastic job of bridging the gap between PwME and the wider community, and helping A. N. Other to see how very badly the BPS science club have been bullying PwME, and manipulating the ME agenda. She is indeed awesome.

    David Tuller is also fantastic. Completely different style, helping build different bridges more focused on the scientific debate. With the active involvement/support of some great advocates and scientists.

    Two very different people, both dedicated to the same cause, and both very effective in their own complementary ways. A two-pronged approach that could bode well for 2018.

    EC really should not have p*ssed them both off (from her point of view that is).
     
    Barry, Dec 31, 2017
    #63
    TigerLilea, Keela Too, Solstice and 15 others like this.
  4. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    You will get no argument from me, i am very thorough but one can't predict the future.
    That said i am reminded of the expression Fortune favours the bold. When you want to achieve great successes you have to take strong (well thought out) action
     
    Alvin, Dec 31, 2017
    #64
    Binkie4, Luther Blissett, ladycatlover and 1 other person like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Indeed, she has hit a needed lever here, public awareness and education as advocacy.

    I noticed that too, he is amazingly good at tearing down alternative facts (also known as lies).

    Very true, though we need more prongs, as many as we can muster.

    So far she is made of teflon, she has done more harm to ME/CFS patients then we have been able to undo, but the battle is not over, we need to penetrate that teflon and discredit her in the public eye. If quackery and lies are shunned whats left is science. Not easy or quick but it needs to be done.
     
    Alvin, Dec 31, 2017
    #65
    Keela Too, Solstice, Allele and 7 others like this.
  6. Forbin

    Forbin Senior Member (Voting Rights)

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    1,581
    Location:
    USA
    Favorite observation from the article:
     
    Forbin, Dec 31, 2017
    #66
    TigerLilea, Viola, Justy and 21 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    True. But two prongs are likely more than twice as effective than one. Fewer, but effective, prongs much better than lots of ineffective ones.
     
    Barry, Dec 31, 2017
    #67
    Binkie4, Luther Blissett and ladycatlover like this.
  8. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    True, but if we can build an army of 50 more :D
     
    Alvin, Dec 31, 2017
    #68
    Luther Blissett, ladycatlover and Barry like this.
  9. large donner

    large donner Guest

    Messages:
    1,214
    How about we all unlike loads of your posts!!!!
     
    large donner, Dec 31, 2017
    #69
    Skycloud, Inara, Arnie Pye and 3 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,515
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    I think it must have to do with sources of funding and having paid staff.
     
    Jonathan Edwards, Dec 31, 2017
    #70
    Viola, MeSci, Valentijn and 8 others like this.
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    In the tent.....out of the tent......

    Let's just get rid of the tent!
     
    Invisible Woman, Dec 31, 2017
    #71
    Solstice, Valentijn, Cheshire and 8 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    52,338
    Location:
    UK
    I think the MEA only funds through donations, sales and membership fees. They don't have any government funding. Don't know about AfME.

    Edit to add:
    It is up to MEA members to write to the organisation board to request exit from the tent - I have done so, but unfortunately most members are likely to be completely unaware of the situation, as I was until I joined PR.
     
    Trish, Dec 31, 2017
    #72
    Binkie4, Solstice, Valentijn and 6 others like this.
  13. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

    Messages:
    1,678
    I was being serious :p

    If I get loads of likes, (like I did for the original post) it makes it harder for me filter messages.

    I don't want to miss someone asking for help as I whiz through a long list of 'likes'.

    I know this sounds spectacularly ungrateful, but If I turn my like notifications off I miss whether a useful post has been liked or understood by someone needing help.

    Please someone steal my post :emoji_warning:

    (If it's hard to format pm me and I'll send you the bbcode version)
     
    Luther Blissett, Dec 31, 2017
    #73
    Dolphin, Inara, Invisible Woman and 2 others like this.
  14. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    I completely sympathise @Luther Blissett - I had to turn like notifications off because foggy brained me kept missing alerts I needed to respond to.
    I hope we can revisit ideas for changing the alert notifications at some stage in the future - having them colour coded or having a separate tab for like alerts might help.
    But this is off topic, I'll give myself a stern talking to.
     
    Liv aka Mrs Sowester, Dec 31, 2017
    #74
    Viola, Dolphin, Keela Too and 5 others like this.
  15. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    682
    Maybe, but that's no excuse. The charities should be there to unequivocally promote the interests and care of patients. Personally I don't think any ME charity should in anyway sit on the fence or appease the BPS brigade, no matter what.
     
    Daisymay, Dec 31, 2017
    #75
    Keela Too, Solstice, Valentijn and 13 others like this.
  16. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    Alvin has offered to do the deed for me :)
     
    Luther Blissett, Dec 31, 2017
    #76
    Dolphin, ladycatlover, Inara and 5 others like this.
  17. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    I love the Dorothy Bishop quote
    that is textbook damning with faint praise.
     
    Liv aka Mrs Sowester, Dec 31, 2017
    #77
    TigerLilea, Viola, Dolphin and 17 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    52,338
    Location:
    UK
    It's interesting hearing about how people use the forum in different ways. I confess I rarely look at my alerts. And I don't trawl through to see who liked what. Life's too short. I just look at threads I'm following and new threads.
     
    Trish, Dec 31, 2017
    #78
    TigerLilea, ladycatlover, Inara and 1 other person like this.
  19. Andy

    Andy Committee Member

    Messages:
    21,963
    Location:
    Hampshire, UK
    Notifications of likes can be turned off in your account settings.
     
    Andy, Dec 31, 2017
    #79
    ladycatlover, Invisible Woman, Barry and 2 others like this.
  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Luther Blissett, Dec 31, 2017
    #80
    Dolphin, Valentijn, ladycatlover and 4 others like this.
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