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ME charities' response to the Reuters article

Discussion in 'PsychoSocial ME/CFS News' started by Andy, Mar 20, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Seconded. John's got a nice radio voice.
     
  2. EspeMor

    EspeMor Established Member (Voting Rights)

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    Hi Trish!

    Noted, we are working, very very hard, on additional things. As a patient network organisation, we would welcome anyone that wants to volunteer with us to change all of these damaging strategies. We are: 1 staff person in the UK and a few volunteers, most fellow pwME, so you can imagine the amount of work and sacrifice that goes into these things. Yet, I think that we are doing the best we can. You, or anyone else, might disagree with the strategy (I don't know if you do!) but we are doing all that we can and I am proud of our team. We are always reading and interacting with you all and it's super valuable, we can improve strategies moving forward! Team work!
     
    Last edited: Mar 22, 2019
  3. Trish

    Trish Moderator Staff Member

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    Hi @EspeMor. Sorry, I simply linked all the charity reps I knew of who are members here. I do understand your situation and appreciate the difference between #MEActon and the two bigger more established charities. I thought of just linking the other two but decided to include you in case there was any coordinated plan behind the scenes between the charities. It was not meant as a criticism of #MEAction.
     
  4. EspeMor

    EspeMor Established Member (Voting Rights)

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    NO worries at all Trish, I didn't take as a criticism :) No coordinated plans behind the scenes as of now, I am afraid. Have a good weekend and thank YOU!
     
  5. JaimeS

    JaimeS Senior Member (Voting Rights)

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    That's what the original article entailed.

    [Edit: everyone here has been really supportive of #MEAction in general and me in particular. And I still wish we could do more.]
     
  6. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Very good, Michiel.
     
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  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thank you.

    (I would be willing.)
     
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  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thank you.
     
  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    The Anthony Hopkins of ME video voice overs :thumbup:
     
  10. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    I wholeheartedly agree with this idea. How we can make it happen?!
     
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  11. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    MEMarge likes this.
  12. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    JaimeS, MEMarge and JellyBabyKid like this.
  13. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    MEMarge likes this.
  14. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    They've had years to prepare a response to this kind of crap, the militant anti-science patient trope has been around for a while now.
     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    I expected the piece to be more substantive than it was, and include some significant point that would need careful rebutting. Instead it turned out to be pretty empty propaganda. But then we had some people react stupidly on twitter and do everything they can to make themselves and other patients look bad. These sorts of things are difficult to predict.
     
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  16. JaimeS

    JaimeS Senior Member (Voting Rights)

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    I also expected it to be more... something. To have something to it. Instead, it was empty of logical argument and mostly consisted of playground-level nonsense.

    But playground taunts stick in the brain.

    We're countering not arguments at all anymore, but propaganda.
     
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  17. chrisb

    chrisb Senior Member (Voting Rights)

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    That was always why simply trying to counter with the science was never going to be sufficient. The science has never mattered to them. But there is no need to hurry over a powerful response. One can see potential benefits in delaying it, so that when the Cochrane developments become known, their cheerleader- in -chief is mired in controversy. Strike too early and the furore might blow over too soon.
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    How to Defeat a Propaganda Campaign
    Defense Against the Dark Arts 402
    https://www.thebalancesmb.com/how-you-can-defeat-propaganda-2295236
     
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  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Researching this sort of thing is about 5-10% of my time lately. It's about our fight but it's also interesting to me because we are currently mired in propaganda and anti-propaganda efforts in every aspect of our media-saturated lives.

    You know me, I love that they're calling it Defense Against the Dark Arts. ;)
     
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  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    It gets complicated though. It seems to me that not only do the BPS crowd expertly wield propaganda but they also use the underdog devices -- such as subversion of the others message.
     
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