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FOI requests reveal how media & parliament being fed stories of ME "harassment"

Discussion in 'Action Alerts and Advocacy' started by Woolie, Nov 15, 2015.

  1. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    @Countrygirl just posted this on another thread, but it deserves its own (there have been some previous threads on the topic, but none I can see that supply the full details).

    Its a report from Tymes Trust, posted on their facebook page, which gives details of various emails and meeting minutes involving the UK Research Collaborative, that were released following a successful FOI request.

    The full doc is here:
    https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

    Highlights:

    Some key notes from a meeting held in January 2013 (bolding is mine):
    Action Points raised at the same meeting:
    Email from Esther Crawley to group, March 2014:
    Do people see evidence here of an organised campaign by a small but powerful and well-connected group to discredit patients who disagree with them?
     
  2. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    Other notable excerpts

    In an email regarding establishing the composition of the UK Research Collaborative
     
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  3. daisybell

    daisybell Senior Member

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    It sure looks like that group of researchers got together and planned how to introduce the notion of harassment, and then fed the flames.... Once the H word was out in the media, the actual form of the harassment no longer mattered. The media can be relied on to exaggerate, and so the campaign gathered momentum.

    Which of course, leads one to consider whether those same researchers actually knew that their theory of ME was wrong from the outset..... Why else refer to the questions etc as vexatious??? Money and reputation on the line for them and financial considerations for the government, health system, insurance companies.... and the driving forces behind the whole thing?

    I'm not usually one for conspiracy theories but you have to wonder..
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    None of those things are harassment. First they redefine our illness, then they redefine harassment. How on earth do they get away with it? Did no-one at any point say "hang on a minute, those things aren't harassment", and wonder why there were so many FOI requests, complaints, and parliamentary questions about these people and their antics?
     
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  5. biophile

    biophile Places I'd rather be.

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    Some more from the Science Media Centre proudly celebrating what they have done:

    http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

    Remember all the articles framing a mysterious group of people as dangerous ME terrorists who are damaging science and making Wessely feel safer in war-zones? Now we know who orchestrated them.
     
  6. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    I do think, @daisybell, that this document suggests these folks really believe in what they're touting. Which isn't to say they don't also have their eyes on the prize at the same time. To me, its kind of a doubly dangerous combination: self-interest and unflappable belief.
     
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  7. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    Oh my lord, it would appear now that this whole thing was actually engineered by the researchers themselves, in cohouts with the SMC. I've been pretty calm up till now, but now I'm really angry!

    What an outrageous thing to do - to smear a whole group of sick people, in order to silence them... and promote totally unsupported psychogenic bullshit!

    The total irony is that they bang on about our fear of the "stigma" of mental health problems, but oh how they've used that very same "stigma" as a weapon to silence us. Do you really think any other group of patients could be so effectively and entirely tainted by these kinds of anecdotes? Let's see, AIDS activists?

    :mad::mad::mad::mad:
     
  8. TiredSam

    TiredSam The wise nematode hibernates

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    That isn't what the SMC is for, surely. Can a case be made for abusing their position and subverting the work of the SMC? Who would one complain to?
     
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  9. user9876

    user9876 Senior Member

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    moderated with many others
  10. user9876

    user9876 Senior Member

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    I think ME patients are probably the most stigmatised group perhaps baring those with severe obesity.

    I've always said that for a lot of the statements they make around harassment if you were to substitute in an alternative minority group it would be considered (or verging on) hate speech and unacceptable.
     
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  11. biophile

    biophile Places I'd rather be.

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    So after all the complaining about the abuse of researchers, "vexatious FOIs" are the worst?

    Two or three "vexatious" requests over several years (according to them), oh the humanity!

    Can science survive the onslaught?
     
    Last edited: Nov 16, 2015
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  12. Wildcat

    Wildcat

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    .
    The SMC should not be on the inside of the CMRC. Early on it was officially stated by the CMRC that the SMC merely had 'an observer role' in the CMRC. Far from being mere observers, they seem to be embedded in it, and the SMC role goes way beyond observation.

    By the way ... the FOI 'Behind the scenes CMRC' emails were first placed in the public sphere by Jane Colby in august 2014. There is a PR thread on it from that time.
    .
     
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  13. lansbergen

    lansbergen Senior Member

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    I am not surprised.

    What can one expect in a country whose primeminister let his grandchild eat a hamburger on TV to show BSE is not a risk? Who do you think advised him to do that?
     
  14. Chrisb

    Chrisb Senior Member

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    For the avoidance of doubt, that was not a prime minister. That was John Selwyn Gummer, now Baron Deben. He was the Agriculture Minister at the time.
     
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  15. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    Okay, I did see some threads but none including the key excerpts. Feel a bit dumb now.... but still angry!
     
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  16. user9876

    user9876 Senior Member

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    I think one of those was for numbers of data already published in a graph form.
     
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  17. Wildcat

    Wildcat

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    @Woolie ... Yes, damn right. patients are justifiably angry. It was all done/arranged in secret, behind our backs. It was ages before patients realised that Peter White was on the collaborative (he isn't anymore, they've got Alistair Miller now)!

    White's presence was 'justified' by the CMRC as part of the 'Broad Church' and 'big unbrella' ethos of the CMRC that its members go on about..
    .
     
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  18. John Mac

    John Mac Senior Member

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    The Prime Minister was the one who left his 8 year old daughter in the pub and only realised when he got home
     
  19. Woolie

    Woolie Gone now, come see me in my new home at S4ME.info

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    I see this apparent "balance" was fabricated too, @Wildcat. Given Wessely's email: “sprinkle one or two scientists/researchers not particularly connected with CFS into the mix'.
     
  20. Sean

    Sean Senior Member

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    Not a good look, is it.
     

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