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  1. Esther12

    Thread for all minutes of the UK CFS/ME Research Collaborative [CMRC] Executive Board Meetings

    Gabrielle Murphy's involvement with learning modules sounds terrible.
  2. Esther12

    Jeremy Vine (BBC radio2 discussions)

    Likely to be terrible?!
  3. Esther12

    Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews & economic evaluation, 2020, White et al

    Maybe they wanted to see how things shook out with Larun, the HRA, etc? Maybe they now feel they have cover for ignoring the problems with this research? Or I guess sometimes things just get delayed? I does look like a ridiculous piece of research if they're just interested in how to manipulate...
  4. Esther12

    AFME - Association for Myalgic Encephalomyelitis website (not Action for ME)

    It could be just a well meaning individual who has struggled to understand all the details of the problems around ME/CFS. It's easy for people who've been following this stuff closely just how confusing it can be for people who are relatively new to it.
  5. Esther12

    "Ehlers-Danlos syndromes: new labels confuse everyone", 2019, Williams, letter to BMJ, includes comments about CFS

    Here's the Rapid Response the letter was taken from: https://www.bmj.com/content/366/bmj.l4966/rr-0
  6. Esther12

    "Ehlers-Danlos syndromes: new labels confuse everyone", 2019, Williams, letter to BMJ, includes comments about CFS

    Any COIs declared? He looks like the sort who might have attracted money from insurance companies: https://uk.linkedin.com/in/tony-williams-4b267412
  7. Esther12

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    The first paragraph of this paper of his also made me think of his PACE work... yuck. https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/reflections-on-the-nature-of-public-ethics/94A53F672D5362318A3F430B43935E7A#xml=http://journals.cambridge.org/data/userPdf/
  8. Esther12

    Should ME organisations do more direct action to get more funding for ME research?

    The most high profile publicity we've got over the last few years has been Kelland's pieces that portrayed patient advocacy efforts as 'radical' and a threat to good science. That sort of visibility is not useful for us and it is worth doing what we can to avoid it imo. We're a weak group whose...
  9. Esther12

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    Was just looking through Jonathan Montgomery's old twitter account (https://twitter.com/prof_jonM), and saw this, in addition to his clear chummyness with Gerada:
  10. Esther12

    Trial By Error: “Bristol, It Is Time to Withdraw Your Complaints to Berkeley”

    It's just absurd how bad Bristol have been. Thanks to @dave30th for putting himself through this nonsense.
  11. Esther12

    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    He seems uninterested in genuinely listening to patients, rather than trying to smear those he doesn't like and use those who tell him what he wants to hear. I'm so sick of propagandists like him. On PACE: https://forskning.no/me-medisin-sykdommer/hard-kritikk-av-stor-me-studie/330976#...
  12. Esther12

    "The motivations behind science denial", 2019, McLintic (CFS mentioned)

    IMO: if he's the sort of person who falls for this sort of empty spin from authority figures then he's probably not the best person to prioritise raising concerns with. It might still be worth a go, but what we've seen so far has not been impressive.
  13. Esther12

    NICE Guideline [NG127]: Suspected neurological conditions: recognition and referral NICE guideline

    Thanks to all those paying attention to this - I fear it could be one of those things that turns out to be more important for us than we'd realised.
  14. Esther12

    "The motivations behind science denial", 2019, McLintic (CFS mentioned)

    Quite a few references from Lewandowsky, who has done his bit promoting lazy prejudices on this topic. Looking for those old references turned up this 2013 blog, which rather misrepresents attempts to get information about PACE: http://www.shapingtomorrowsworld.org/lskymannSubter.html
  15. Esther12

    Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

    He seems to miss (evade?) every point. I think this new blog is even more contemptible than the first. It's as if he really thinks that knowing what he's talking about is entirely unnecessary.
  16. Esther12

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    edit: @Barry already posted these links back in 2017 - https://www.s4me.info/threads/trial-by-error-a-sneak-preview-of-next-week%E2%80%99s-post-27-december-2017.1677/#post-28696 The HRA has helpful guides on 'is it research' and 'do I need NHS REC approval'...
  17. Esther12

    Bristol Randomised Trials Collaboration

    It's so worrying having Bristol take a lead on how clinical trials should be run.
  18. Esther12

    United Kingdom: Science Media Centre (including Fiona Fox)

    Free reservations for a Fiona Fox talk in Bristol on 25th November!: Science in the headlines – where science meets controversy by NIHR Bristol Biomedical Research Centre https://www.eventbrite.co.uk/e/science-in-the-headlines-where-science-meets-controversy-tickets-77144333779
  19. Esther12

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    That is so often the case. Why can't they just stay quiet, at least until they've spoken to someone who knows what they're talking about?
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