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Special Report - Online activists are silencing us, scientists say Reuters March 2019

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Sly Saint, Mar 13, 2019.

  1. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    UK
  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    An updated IOM report which includes a section on treatments would also be useful.
     
    Sean, Amw66 and rvallee like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Not in so many words but he said that it was up to us to keep applying pressure, knowing full well that we are unable to do so and that it has led us nowhere despite decades of trying. The only meaningful change happened when institutions did their job, like the IOM report. Nothing that we do on our own has any effect and he knows this.

    Then he talked about hope without action being demoralizing and... announced no action. Funding is actually going down next year.

    So he didn't say those words but might as well have.
     
    JemPD, Arnie Pye, Sean and 3 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    So now the guy who wrote the slanderous article implying, once more, some unspecified misconduct blocked everyone on Twitter who corrected him. Most of us only politely sent him published research. And of course he's supposedly a "skeptic", somehow they always manage to be the most gullible out there. What pathetic cowards these people are.

    Random idiots can publish lies about us and not give a damn. Doesn't matter that it's slanderous, as long as they don't name names it's all good, damn the consequences for us. Which in some cases is death following years of abuse and willful neglect that would amount to criminal behavior if we had a "respectable" disease and not on some blacklist of diseases to hate. How great is that? This is ridiculous. I mean, even Reuters isn't bothered by publishing misleading claims and basic factual errors. The editors stand by those.

    What the hell are we supposed to do? And Sharpe knows damn well what he's doing, that he is hurting us on purpose, and no one is bothered by that, not even the university that employs him has issues with one of their professors unethically slandering sick people begging for their lives and repeating baseless lies that have disastrous consequences.
     
    Hipsman, Simbindi, MEMarge and 12 others like this.
  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    There is one rules in place for the protection of people yet none of them apply to people with ME. I have wondered about it for years.

    Before anyone enters a clinical trial they must be warned of all possible harms they may experience but not in ME. Patient surveys may be self selected so only people who experienced a bad effect will answer them but the absolute numbers are still large even if the proportions do not match the wider population. Yet participants are no warned.

    Ethical research on children, forget it. I could go on and on but you all know what I mean already.
     
    Amw66, Simbindi, MEMarge and 8 others like this.
  6. Trish

    Trish Moderator Staff Member

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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    I’m liking Ben Marsh
     
    Barry, JemPD, Annamaria and 10 others like this.
  9. It's M.E. Linda

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

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    918
    Me too!
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    Why would any patients want Kate Kelland reporting on anything to do with CFS?
    edit: Not that I think something like this would make her any worse.
     
    Last edited: Sep 7, 2019
  12. Barry

    Barry Senior Member (Voting Rights)

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    upload_2019-9-7_13-16-19.png
    I think the questioner was being sarcastic towards KK, saying that given she seems to consider herself such a self-proclaimed expert on ME in her writings, then she cannot fail to know about the OMF Symposium and the scientist there. Effectively challenging KK to abandon her BPS-biased crap and get in touch with some real science and scientists.
     
    MeSci, Willow, Annamaria and 5 others like this.
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    Yes, but that's a challenge we don't want her to take up!
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    Why not? If she cocks it up and slants her reporting it will be very easy to expose it for what it is, and show the shallowness and falseness of her reporting. And if she genuinely became better enlightened about some of the real science of ME that would also be good; would not be the first time an enemy transitioned to ally. I like this person's challenge. In truth I doubt KK has the bottle to take it up anyway.
     
    MeSci, Annamaria, Snowdrop and 6 others like this.
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    It may be easy to expose it, but not to persuade anybody to take note of what is exposed.
     
    EzzieD, Sarah94, Binkie4 and 5 others like this.
  16. Barry

    Barry Senior Member (Voting Rights)

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    Agreed. I still think it would be a mistake to be afraid of challenging someone like KK to look at real science and scientists. She should be challenged to run sanity checks on what she writes, and is going to write.
     
  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    Just thought I should make clear that it's not like I'm really concerned by the posted tweet or anything. I can post about being annoyed by some of the tweets I see on twitter, so it could be people think I am here.

    I also think Kelland has shown she is terrible and that her bad work effectively harms us though. I don't think that there's any real chance of her ever doing good reporting on CFS.
     
    ladycatlover, Barry, Sarah94 and 2 others like this.
  18. Mithriel

    Mithriel Senior Member (Voting Rights)

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    It is important that the likes of her and our friend Michael are shown to be unwilling to educate themselves about the latest science of a disease they claim to have expert knowledge of. They can only state there is no physical effects because they ignore every opportunity to find out that there are such things.
     
  19. Milo

    Milo Senior Member (Voting Rights)

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    Merged thread

    Rolling eyes. Michael Sharpe is at it smearing patients once more.

    https://web.archive.org/save/https:...-quits-because-online-trolls-are-too-hostile/


    It is quite nasty. Didn’t he announce before he was quitting before and why didn’t he leave then? Playing victim again?

    Just a section of it here...

    Edit to add: this is the definition of gaslighting.
     
    Last edited by a moderator: Dec 3, 2019
    2kidswithME, Barry, Mithriel and 7 others like this.
  20. TiredSam

    TiredSam Committee Member

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    Classy news outlet he's chosen to announce it in this time. If that's the only place he can get his resignation announcements published now I find it most encouraging. Next to a study showing that marijuana gives women better orgasms, and stories about a vicar getting caught having affairs with two women and 250 Amish men carrying a barn (you'd think they'd have included a picture with that).
     
    Barry, Louie41, MEMarge and 16 others like this.

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