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Press Release available: "Tribunal Orders Release of Withheld Data from Controversial £5M CFS Study"

Discussion in 'General ME/CFS News' started by Tom Kindlon, Aug 18, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    MEaction11057462_1627862554162811_7628310772215289553_n.png
    #‎MEaction‬ have created and started to circulate a press release with the title:
    It contains expert comment from nine people from the US, UK, Australia and Ireland.

    Alem, who made the request and fought the case, is from Australia so one or more Australian media outlets might find it of interest.

    If you know of any journalists or media outlets who might be interested in a copy, just ask them to email me at tom kindlon (all one word) at gmail dot com.

    It is also being circulated through a particular press release service.
     
  2. Denise

    Denise Senior Member

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  3. Tom Kindlon

    Tom Kindlon Senior Member

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    As it contained some telephone numbers and to keep it fresh for journalists, a link is not being posted publicly at this time.
     
  4. Denise

    Denise Senior Member

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    Thank you.
     
    Tom Kindlon likes this.
  5. alex3619

    alex3619 Senior Member

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    This is exactly the kind of thing we need. :thumbsup:
     
  6. Esther12

    Esther12 Senior Member

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    You know any Australian journalists?

    Brave Aussie takes on snobby Brits... and wins! Surely that will appeal, especially while the UK is second in the Olympic medal table.
     
  7. alex3619

    alex3619 Senior Member

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    Not yet. There are stories here that might be well received.
     
  8. Woolie

    Woolie Senior Member

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    On a lighter note, so far, Great Britain and Australia have about the same rate of gold medals per head of population (around 0.3 per million population). New Zealand has more (0.9 per million) :D.

    USA and China are the underachievers, with only 0.1 and 0.01 gold medals per million respectively.

    Hats off to Jamaica, which is the all-out winner so far, with 1.4 gold medals per million population!
     
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  9. user9876

    user9876 Senior Member

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    But I think the uk is spending about £5.4 per gold medal. I'm not sure about the others. I think the tightest correlations were with spending rather than population. Clearly with population there are a number of outliers such as India.
     
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  10. Woolie

    Woolie Senior Member

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    Its all pretty nuts when you think of it like that, isn't it? What a waste of money!
     
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  11. charles shepherd

    charles shepherd Senior Member

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    I'm sure that people would like to see the press release and the expert comments on the judgement that are included with it.

    As one of the docs who has provided an expert comment I am quite happy for this information (with our personal contact details and phone numbers etc removed) to be placed in the public domain at a suitable interval after release to the journalists.
     
  12. Kalliope

    Kalliope Senior Member

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    Norway
    I wonder if Drummond Rennie (co-organizer of CONSORT, a former member of the Commission on Research Integrity for the US Public Health Service, and former president of the World Association of Medical Editors)
    might be interested in the press release? I thought his recent comment in Nature "Let's make peer review scientific" was very good.
     
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  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    If you PM it to me, I could translate it to norwegian and send it to the main newspapers etc.
     
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  14. shannah

    shannah Senior Member

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    With personal details removed, I think many of us would be very interested in seeing the press release.
     
    leela, ukxmrv, jodie100 and 2 others like this.
  15. Tom Kindlon

    Tom Kindlon Senior Member

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    Me too.
     
    Keela Too, moosie and mango like this.
  16. snowathlete

    snowathlete

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    I think as patients we need to wait to see the press release. Media want fresh information/quotes from experts to use in their articles. If the release is already out there in the public domain, appearing in blogs and so on, then they won't use them and may not even cover the story as a result. Good that it will be made public after an appropriate interval, but I wouldn't want that to jeopordise the media covering the story.
     
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  17. Sasha

    Sasha Fine, thank you

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    Really looking forward to the UK media in particular writing about this gigantic scandal in their midst.
     
  18. JamBob

    JamBob Senior Member

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    Haha - I think hell will freeze over before we see the UK media reporting on this*. The UK media only like CFS stories that have been rubber-stamped by the lovely folks over at the SMC.

    * Though I'd love to be proven wrong!
     
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  19. Sasha

    Sasha Fine, thank you

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    Well, we're about to see...
     
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  20. Esther12

    Esther12 Senior Member

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    The UK media have done a terrible job with ME/CFS/PACE... are they going to want to point this out to their readers?
     
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