1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Janet Dafoe - The Whitney Plea

Discussion in 'General ME/CFS news' started by Eagles, May 10, 2018.

  1. Eagles

    Eagles Senior Member (Voting Rights)

    Messages:
    176
    Janet Dafoe - The Whitney Plea



    Janet Dafoe has shared a special plea from her son Whitney, and she's asking for your help to amplify his voice as part of the #MillionsMissing day of action this Saturday...
     
    Woolie, MEMarge, petrichor and 14 others like this.
  2. Keela Too

    Keela Too Senior Member (Voting Rights)

    This could be really powerful.
     
    MEMarge, Joh, Amw66 and 6 others like this.
  3. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Messages:
    622
    Yes, lets all get our video clips sent to M.E Action..now is our chance
     
  4. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    It's a lovely idea, but nobody at NIH or whatever is going to watch hundreds of videos.
    I think it would require someone to make a mosaic-style video, which might have its own kind of powerful impact.
     
    MEMarge, Pechius, erin and 4 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,732
    They don't need to watch them. Knowing hundreds or thousands of people have done it, though, could be enough of a statement.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Thats the basic idea
     
  7. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    True, but the visual impact of ever more filing the screen, in one sitting, is less easily dismissed or forgotten.
    Just sayin, if someone has the knowhow to do that I think it would be a strong message.
     
  8. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Messages:
    622
    I think we should all do one and let M.E Action take it from there...we ain't got nothing to lose...
     
  9. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    Edited at the request of the poster.

    This post showed a video of a young boy doing a similar action to that shown by Janet. It was felt by the poster and the mod team that, given the nature of the subsequent discussion, it was no longer appropriate that he be identifiable in a public thread.
     
    Last edited by a moderator: May 11, 2018
  10. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    2,092
    Sorry to say this feels a bit like a strange cult or club ...I get it, but I am creeped out by it a bit.

    Sorry maybe it’s just me....seems like it’s a special sign or ritual led by the head of a religious sect.

    I’m not sure this is powerful more a bit disturbing.

    I’ve held back saying anything and thought about this a lot before posting, but that last video really made me want to say something.
     
    chrisb, Marky, MsUnderstood and 13 others like this.
  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,732
    I disagree. It's a way for people who might not be able to communicate to articulate their desire to get better. It's uncomfortable, but it's supposed to be. It's a travesty that so many people are so ill, and there's nothing (or next to nothing) being done about it except for a tiny handful of exceptions.

    I think some people will have a strong gut reaction to this. Good. It's hardly AIDS patients flinging their dying bodies at people, but it's a start.
     
    Bill, Joh, Alvin and 8 others like this.
  12. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    2,092
    I understand the sentiment, I’m just pointing out the potential downside. I realise that this is emotional for some but looking at it dispassionately as a device for communication I think it has some drawbacks. The first impression (shock) should lead to realisation or further enquiry not suspicion. Linking this seemingly miraculous (almost religious) response to a treatment (that others in advocacy are saying doesn’t exist) makes me suscipisious I’m afraid.

    Looks like a publicity stunt for the OMF and brings everything back to them. I find this totally repugnant.
     
  13. TiredSam

    TiredSam Committee Member

    Messages:
    10,496
    Location:
    Germany
    Well I wasn't going to say anything, but I completely agree with you.
     
    chrisb, Marky, Snowdrop and 10 others like this.
  14. oldtimer

    oldtimer Senior Member (Voting Rights)

    Messages:
    645
    Location:
    Melbourne Australia
    :eek: I find this a bit disturbing too. I have more than a passing interest in voluntary assisted dying etc. and the action immediately looked very much to me like a plea to be helped to die. Seeing a child do it took me aback.
     
  15. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,320
    The video of the child is disturbing for me. "Millions Missing" could be interpreted as an alien abduction to the novices who are unfamiliar with M.E. I'm sorry but it's a bit weird.
     
    Marky, oldtimer, MarcNotMark and 6 others like this.
  16. Hell..hath..no..fury...

    Hell..hath..no..fury... Senior Member (Voting Rights)

    Messages:
    1,720
    Me too. It could be interpreted in so many strange ways.

    Edit: For me personally: my first interpretation of that symbol for someone in whitney’s state (i was in that state for years too) is not a symbol of ‘help me to get better’ I won’t mention what it means to me.
     
    Last edited: May 11, 2018
  17. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    Agreed, and the potential for mocking is very high. We don't need any more mocking. I'm imagining a late night host or stand-up comic making the twirly hand motion and saying something rude :(
    I appreciate what Janet is getting at here, but more thought needs to go into the audience.

    I agree that if someone cannot speak they can use a placard with their message.
     
    Marky, AliceLily, Inara and 8 others like this.
  18. Keela Too

    Keela Too Senior Member (Voting Rights)

    Ah... this I didn't see.... but agree it could be interpreted that way. Hmmmm....
     
    Inara, oldtimer, MEMarge and 5 others like this.
  19. MsUnderstood

    MsUnderstood Senior Member (Voting Rights)

    Messages:
    214
    Location:
    Canada
    I agree with many of the above comments. Viewing the video without Janet's explanation, I would interpret Whitney's gestures (demonstrated by Janet) as him pleading for help to die.
     
    Andy, Dr Carrot, MEMarge and 6 others like this.
  20. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Would we say the same thing if he used a few words of sign language instead?
     
    adambeyoncelowe likes this.

Share This Page