Reports of Harrassment by ME/CFS Patients to Researchers Overstated?

Discussion in 'ME/CFS and FM News' started by Cort, Nov 8, 2017.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Death threats that were reportedly made to researchers during the XMRV era and to Simon Wessely that got some media play back in 2011 apparently helped to set the stage for the idea that at least some people with ME/CFS present a clear and present danger to researchers they disagree with.

    During the XMRV trials Myra McClure reported to the Guardian in 2011:

    Esther Crawley who has lead a series of CBT/GET and most recently a Lightning Process study reported in 2011 of receiving the following emails.

    While emails like that only hurt ME/CFS efforts, the idea that ME/CFS patients are a danger to researchers has taken two big hits recently.

    The idea of mentally unhinged ME/CFS patients was used unsuccessfully by Queen Mary University of London (QMUL) in an attempt to squash the release of the PACE data. That attempt backfired when the court decided that Queen Mary's researchers, not the ME/CFS researchers, were more the problem. After review the Court felt that reports of hostile behavior were "grossly exaggerated".

    Despite that the damaging reports that out of control ME/CFS patients are out to get researchers have persisted. (From the Tymes Trust report).

    Two Freedom of Information Act requests by The Tymes Trust, however, indicate that no harrassment claims or personal threats made by ME/CFS patients against Bristol University personnel including Crawley have been received by the University from 2010 to 2017. It's possible that Crawley never reported the emails to the University but the story undercuts the perception that they were a real threat.

    Getting the monkey off our back that people with ME/CFS are mentally unstable would be a good thing. Read entire report here.
    Last edited: Nov 8, 2017
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  2. Kathryn 1

    Kathryn 1 @Copyright 2017 Kathryn 1. All rights reserved

    The following list is the number of FOIs received by Esther Crawley who claims they are a form of harassment.

    Her accusations in 2013 actually involved only 4 in 2010, of which none were considered vexatious.

    2008 – 0
    2009 – 0
    2010 – 4
    2011 – 0
    2012 – 0
    2013 – 0
    2014 – 0
    2015 – 0
    2016 – 5
    2017 – 12

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