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A proposal for ME Action: a commitment to evidence-based medicine

Discussion in 'General Advocacy Discussions' started by ME/CFS Skeptic, Oct 2, 2019.

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Page 3 of 8
  1. Griffin

    Griffin Established Member

    Messages:
    12
    Thanks!

    Just I don't see CBT/GET talked about in US ME Support groups on Facebook. That's why I was thinking that.
     
    Griffin, Oct 6, 2019
    #41
    alktipping, ME/CFS Skeptic and MSEsperanza like this.
  2. Guest 102

    Guest 102 Guest

    Hi, Michiel, Thank you for your hard work in this, please add my name:

    Nasim Marie Jafry, patient and author of The of State of Me (2008)
     
    Guest 102, Oct 12, 2019
    #42
    MSEsperanza and ME/CFS Skeptic like this.
  3. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks Nasim. You're on the list!
     
    ME/CFS Skeptic, Oct 12, 2019
    #43
    MSEsperanza and Deleted member 102 like this.
  4. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    4,511
    Thanks Michiel

    please add my name to the list

    JemPD - member of S4ME & ME/CFS patient
     
    JemPD, Oct 12, 2019
    #44
    MSEsperanza and ME/CFS Skeptic like this.
  5. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks JemPD, you're on the list!
     
    ME/CFS Skeptic, Oct 12, 2019
    #45
    MSEsperanza likes this.
  6. humbertus

    humbertus New Member

    Messages:
    1
    Thanks Michiel for your job.

    Please add my name to the list

    Humbert ME @Bert_EM_SFC (Twitter) I'm #pwME.

    Thanks,
    greetings to all
     
    humbertus, Oct 14, 2019
    #46
    MEMarge, Nellie, Hutan and 6 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    15,110
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    UK West Midlands
    Welcome @humbertus :thumbup:
     
    NelliePledge, Oct 14, 2019
    #47
    MEMarge, Hutan, MSEsperanza and 3 others like this.
  8. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    4,097
    Location:
    Belgium
    Thanks for your support, you're on the list now.

    Welcome to the forum. Hope you'll stick around.
     
    ME/CFS Skeptic, Oct 14, 2019
    #48
    Hutan and MSEsperanza like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    56,048
    Location:
    UK
    I note that some people have posted their real names on this thread.

    A reminder that this thread is public. This means if you have posted your real name, it is now publicly linked to your forum name and that link can be found on internet searches.

    If you would prefer that public linking between real name and forum name not to be possible, I suggest you delete your post, or report it and ask moderators to delete it.
     
    Trish, Oct 15, 2019
    #49
    alktipping, Subtropical Island, Hutan and 6 others like this.
  10. Annamaria

    Annamaria Senior Member (Voting Rights)

    Messages:
    260
    Hi @Michiel Tack - please add my name:
    Annamaria, member of S4ME; sick with ME since 1990.
     
    Annamaria, Oct 16, 2019
    #50
    MEMarge and MSEsperanza like this.
  11. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    4,097
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    Thanks. I've added you to the list.
     
    ME/CFS Skeptic, Oct 16, 2019
    #51
    MSEsperanza likes this.
  12. JaneL

    JaneL Senior Member (Voting Rights)

    Messages:
    364
    Location:
    Hampshire, UK
    Thank you @Michiel Tack for your work on this. Please add my name to the list.

    Snowflake - ME patient since 2005 and member of S4ME
     
    JaneL, Oct 16, 2019
    #52
    MSEsperanza and ME/CFS Skeptic like this.
  13. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    4,097
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    Thanks @Snowflake I've added you to the list!
     
    ME/CFS Skeptic, Oct 16, 2019
    #53
    MSEsperanza and JaneL like this.
  14. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I plan on sending the proposal tomorrow.
     
    ME/CFS Skeptic, Oct 19, 2019
    #54
    Hutan, Saz94, JaneL and 3 others like this.
  15. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
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    Belgium
    For transparency:

    I've just sent the email to info@meaction.net and the emailadressses of the ME Action team listed on this webpage (https://www.meaction.net/about/team/).

    I've added the following introduction:

    Dear ME Action,

    In light of your participatory values and policy initiative, I would like to present the following proposal to inscribe a commitment to science and evidence-based medicine in ME Action's core values and principles. Thirty-six members of the ME/CFS community have co-signed the public statement. I hope that ME Action will consider this proposal carefully and I look forward to hearing your response.

    Thank you for your consideration,

    Michiel Tack.

    ...​

    After which I've added the full statement with co-signees.


    I hope to keep you informed when I get an official response. Many thanks for all your help and support.
     
    ME/CFS Skeptic, Oct 20, 2019
    #55
    alktipping, MEMarge, Nellie and 14 others like this.
  16. ahimsa

    ahimsa Senior Member (Voting Rights)

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    2,798
    Location:
    Oregon, USA
    ahimsa, Oct 23, 2019
    #56
    MEMarge, ME/CFS Skeptic and Trish like this.
  17. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Location:
    Atlanta, GA, USA
    Wilhelmina Jenkins, Oct 25, 2019
    #57
    ME/CFS Skeptic likes this.
  18. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    No not yet, but perhaps it's still a bit early. I've only sent it on Sunday.

    I suspect if they were to take it seriously and discuss it among ME Action staff, it would take longer than a couple of days to give a response.

    But I will keep you informed.
     
    ME/CFS Skeptic, Oct 25, 2019
    #58
    MarcNotMark, Andy, Wilhelmina Jenkins and 3 others like this.
  19. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Location:
    Atlanta, GA, USA
    Wilhelmina Jenkins, Oct 25, 2019
    #59
    alktipping, ChloeC, rvallee and 3 others like this.
  20. Guest 2176

    Guest 2176 Guest

    With all due respect, don't you all think it's more important that orgs like MEAction be pressed on issues like taking more radical direct action (a la ACT UP) ensuring greater funding for this illness, than petition them about something like this? There is very little high quality replicated evidence e on this condition and it's because we as a community havw failed to fight as hard as aids patients did, and held the NIH to account for funding
     
    Guest 2176, Oct 30, 2019
    #60
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