Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Court Cases, Legal cases, New Laws & Government Policies for benefit of ME/CFS

Discussion in 'Upcoming ME/CFS Events' started by Hermes, Feb 6, 2016.

  1. Hermes

    Hermes

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    Dublin, Ireland
    February - March 2016

    This will list events such as Court Cases, Legal cases, New Laws and Government Policies for the benefit of ME/CFS during February to March 2016. ME/CFS persons and organisations are encouraged to take court actions and legal actions to enforce their legal and human rights and actions to influence politicians and government to take ME & CFS seriously through new laws and new policies. Some info on this at www.me-ireland.com/bogus.htm
    1. This is a sinister development requiring counter actions. The following letter template by Peter White was sent to wessely school psyhs and others shows that they wish to use MP's in parliament to pass a new law to exclude FOI requests for data in research projects.

      The template letter that is attached for sending to Parliament attempts specifically to get an exemption for the PACE trial:

      Dear XXX,

      The Intellectual Property bill currently going through Parliament includes a proposed exemption for current research from disclosure under the Freedom of Information Act requests and would prevent the premature release of data in academic research.

      We very much welcome this necessary exemption as we believe that it will do much to avoid the significant risks to academic freedom presented under the current pre-publication exemption of the Act. We also believe that it will help ensure the ability and willingness of researchers to engage in free inquiry into important areas of research.

      We are writing to you because we are concerned that the bill as it stands may not fully clarify when the exemption from requests applies. In many cases, a research project proceeds via a series of publications, rather than one alone, progressively investigating and reporting outcomes. This, for example, is the case with the P/VCE Trial, an important study into the safety and efficacy of various treatments for Chronic Fatigue Syndrome in which QMUL researchers have participated for the last 10 years. Here there have been separate papers, published according to a defined research and publication strategy, that have addressed, or will address in sequence the main results of the effectiveness and safety of the treatments, their cost-effectiveness, long-term follow-up and the mediators of the treatments to explain how they work. [Emphasis added]

      It is not immediately clear from the bill as it stands whether information from such a continuing series of publications within a given research project would fall within the exemption beyond the first publication, since it may be argued that a “report of the research” has already been published under the present wording of proposed Section 20.

      We would therefore suggest the following slight change to clarify “the programme” and “publication… of a report”:

      “the programme is continuing with a view to the publication, by a public authority or any other person, of a report of the research that either includes the requested data or the analysed results thereof.” [Emphasis in the original]

      We hope that you will raise this issue in Parliament so that the bill may be ensured to have its intended and necessary effect.

      With best regards

      XXX

      and an email from Peter White to Fiona Fox, science media centre

      The source for the October 28, 2013 email is redacted but the CC to Fiona Fox is revealed along with the subject letter:

      Dear all.

      As you can read, QMUL are lobbying MPs to get a good FOIA exemption passed into law that properly defends research. Please use this as a basis for asking your own Universities and other likely lobbyists to get in touch with their own or your own friendly MPs.

      Best wishes,

      Peter
     
    Last edited: Feb 6, 2016
  2. energyoverload

    energyoverload Senior Member

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    London
    Do you have a source/original of this email?
     
  3. Hermes

    Hermes

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    Dublin, Ireland
    james coynes blog
     

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