Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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"Interdisciplinary Social Action" by Leonard Jason et al. on ME, CFS, etc.

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 1, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Jason L. A, Damani McClellan, Kristen Gleason, Interdisciplinary Social Action
    GOUni Journal of Management and Social Sciences 4(2) 280-289
    ISSN: 2550-7265

    Free full text: https://t.co/Z55oZY3z7d

    A lot of this is about their ME and CFS work.
     
  2. Dolphin

    Dolphin Senior Member

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    C51umwCXMAUkYL6.jpg large.jpg

    I didn't realise but the left half of this image refers to an actual event that is happening this month. See:
    https://www.eventbrite.co.uk/e/standing-up-for-science-a-panel-discussion-tickets-32226341856

    https-%2F%2Fcdn.evbuc.com%2Fimages%2F28785733%2F134672936453%2F1%2Foriginal.jpg
     
    Last edited: Mar 1, 2017
    Jo Best, Valentijn, Joh and 5 others like this.
  3. AndyPR

    AndyPR Senior Member

    So these images confused me for a while. But basically the person who tweeted a link to Lenny's paper, took the image of an event where Weasley is going to tell his normal sob story of (unproven) death threats and his incredible bravery in the face of them and added a section of text from Lenny's paper to it.
     
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  4. BurnA

    BurnA Senior Member

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    This is organised by sense about science,
    This is what one of their people said to @JohntheJack - details here

    'We haven’t had a position on the PACE trial. It was a trial, it turned out to be flawed in its design.'

    How can they ask SW to participate in this given his statements that PACE was a thing of beauty.

    I think we should be asking SAS some more questions.
     
    JohntheJack, Woolie, Binkie4 and 13 others like this.
  5. slysaint

    slysaint Senior Member

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    "
    Join three previous John Maddox Prize winners - Dr David Robert Grimes, Professor Elizabeth Loftus, Professor Sir Simon Wessely - and award-winning science journalist Natasha Loder as they discuss their experiences of overcoming adversity to talk about evidence. The discussion is chaired by Tracey Brown, managing director of Sense about Science.

    Venue: Lecture theatre LG02, Professor Stuart Hall Building, Goldsmiths University of London

    Date: Wednesday 29th March Time: 7.00pm - 9.00pm

    General Admission Price: £8 (incl. wine reception)"

    At least they get a glass of wine.
     
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  6. AndyPR

    AndyPR Senior Member

    Whine reception - is that what the audience have to do when listening to Wessely??
     
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  7. user9876

    user9876 Senior Member

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    Seems like another occasion where sense against science can promote outcome switching as acceptable when their friends do it but otherwise not as with their all trial (apart from ones run by their friends) campaign.

    We know that the SAS campaign person (Sile Lane i think?) signed up to stigmatizing patients because asking questions and using FoI to get data is harassment in their eyes. Of course we now know why they were so keen to hide the (PACE) data.
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    You wonder why at this point SW wouldn't simply decline the offer to repeat this drivel. It must be quite tiresome by now and he knows that the cat is out of the bag and that it's not his made up/imaginary/fake/fantasy narrative out in the wild now. I guess he signed up for life.
     
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  9. user9876

    user9876 Senior Member

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    His career is build on this approach so he can't shut up. I did wonder if he would start talking about fake patients spreading bad stories. But then I realized his entire approach is to call patients fake.
     
  10. Sean

    Sean Senior Member

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    Wessely loves the sound of his own voice way too much to ever be able to voluntarily shut up.

    Will Sense About Science give the targets of Wessely's relentless smears the right of reply?

    Or are we such lowlifes that even that fundamental principle of justice is denied us?
     
    SamanthaJ, Jo Best, ukxmrv and 4 others like this.
  11. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    UK
    For some additional context, for those who haven't already seen it:

    http://bit.ly/1vSRhOI

    BEHIND THE SCENES:
    SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
    A new Report from Tymes Trust


    31 August 2014

    Includes extracts from exchanges obtained under FOI that took place prior to the setting up of the UK CFS/ME Research Collaborative (UK CMRC, with references to Science Media Centre involvement, Fiona Fox and Support4rs.

    http://www.support4rs.com/about-us/

    (currently undergoing maintenance)

    Company is risk management outfit. Some pages can be viewed via webcache

    http://webcache.googleusercontent.com/search?q=cache:http://www.support4rs.com/about-us/

    ----------------

    Jane Colby document attached in PDF format

    Extract

    Quotes 15-18 are taken directly from this meeting's records in the email of 1st February.

    • (quote 15)

    Current situation

    Coming out’ about the harassment has led to increased support for CFS/ME
    researchers, for example, from colleagues who were not aware of the situation.

    • (quote 16)

    Harassment

    - Harassment is most damaging in the form of vexatious FOIs.
    - Complaints are also causing problems. Researchers are still dealing with complaints
    about them to the GMC.
    - House of Lords Debates on CFS/ME can result in Parliamentary Questions which often
    require detailed responses

    • (quote 17)
    .....
    researchers are using strategies to reduce the impact of harassment and put
    the case for research into CFS/ME including

    Learning about the FOI Act and using strategies to reduce time spent responding, eg
    putting minutes of meetings online

    - Coming together as a research community to respond to criticisms eg the joint letter in
    response to criticisms of Simon Wessely receiving the John Maddox prize.
    - Working with trusted journalists to cover the problems associated with CFS/ME research
    - Esther Crawley and Stephen Holgate are establishing a research collaborative including
    researchers, charities and other interested parties. There will be a launch event on 22nd April.

    •(quote 18)

    from Action Points

    - SMC
    – run FOI Act brainstorm

    - ALL
    – look for opportunities to publicise CFS/ME research and give background
    information about the condition

    - Support4rs

    – work with Peter White and Simon Wessely to develop resources for dealing with harassment

    - SMC
    – run a press briefing on biosocial illness to improve public understanding.
    Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris
     

    Attached Files:

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