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  1. Esther12

    NICE Annual Conference 2019: "Transforming care"

    Looks terrible. Simon Wessely in conversation with Esther Crawley's subordinate Phil Hammond? I can only imagine the splurge of manipulative propaganda the audience will get to enjoy. I think NICE is a pretty broken institution.
  2. Esther12

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    It would be good if the fact it might time out was made clear to people at the start... I'm still in the pain over stupidly losing a post I was drafting yesterday.
  3. Esther12

    Finally, I’ve found what caused my brain fog, chronic fatigue, depression and aching joints...an insect bite! - James Delingpole

    I thought Dellingpole said he'd cured his CFS with some bizarre beathing technique? Now, after displaying his scientific expertise with bizarre climate change denial theories, he's moved on to stem cell treatment for Lyme disease? I only ever see his name when he's getting attention for talking...
  4. Esther12

    Why Bioethics Should Be Concerned With Medically Unexplained Symptoms. (2018) O'Leary

    Anyone can get access via scihub: http://sci-hub.tw/ I googled the article's title, got the DOI, then entered into sci hub for this link: Medically Unexplained Symptoms and the Diagnosis of Medical Child Abuse. Eichner M1. http://sci-hub.tw/10.1080/15265161.2018.1447047
  5. Esther12

    Why Bioethics Should Be Concerned With Medically Unexplained Symptoms. (2018) O'Leary

    Just thought I'd link to the Kanaan response to this for those interested in this paper, even thought I didn't think his response was interesting: Neurologists, Psychiatrists, and the Angry Patients They Share Richard A. A. Kanaan...
  6. Esther12

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    Looks like the debate will be early in the day: https://calendar.parliament.uk/calendar/Commons/All/2019/1/24/Daily edit: Actually, I'm really not at all clear what the above indicates about timing. I may have misread it. EDIT 2: Apparently Monaghan expects the debate to take place around 2pm.
  7. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Yes. This is such a difficult one though, and it's hard to know how much we should let legitimate concerns about prejudices stop us from making justified complaint. There's also the problem that the patients who are likely to consider these matters, and perhaps avoid making a complaint because...
  8. Esther12

    Concerns about Cochrane

    Cochrane EIC David Tovey has written a response to the recent BMJ piece: https://www.bmj.com/content/364/bmj.k5302/rr-7 I struggle to judge some of this stuff.
  9. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Oh sure - I certainly wasn't saying that people shouldn't criticise what VES has said, or that they shouldn't be much more critical than I've been. It just seemed like there was more heat to some of the criticism than I would have expected. I guess TiredSam did say that maybe he'd gone too far...
  10. Esther12

    Scotland - National Action Plan on Neurological Conditions (Draft for consultation) 2019-2024

    At the moment, the introduction of 'specialist services' could well do more harm than good. Of those being paid to run such service in the UK, how many have spoken out about the sort of problems we've seen from PACE? How many have just cashed their cheques while misleading patients about the...
  11. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    I guess that we all need to make our judgements on the relative value of just VES's claims. For me, they're still of some value, and I can see that there are some legitimate reasons for not wanting to post a video like the one described on-line. There does seem to have been a long campaign...
  12. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    There must be some way of challenging the SMC - they're such blatant bullshit artists, but in a position of real importance and presenting themselves as noble arbiters of what is reasonable.
  13. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Providing accurate information is valuable for helping people make informed judgements? I don't think that there needs to be any more to it than that. I guess that can be complicated by the fact that VES seems to be arguing for what she sees as a more pragmatic approach to these matters, and...
  14. Esther12

    News from Belgium

    Thanks so much for that @Michiel Tack - sounds like a pretty annoying report overall, but that the scandal around PACE may have forced in a few hints of reasons for positivity. I wonder where the Minister got their interpretation ("highly successful") of the report from? Could it be that the...
  15. Esther12

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    That's true, but these protocol deviations are still relevent to the Cochrane assessment of risk of bias, as Courtney pointed out: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/detailed-comment/en?messageId=160462675
  16. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    I don't know. If it is a hugely nasty attack on Wessely full of lies and threats then releasing in could 1) be unpleasant for Wessely and his family, 2) encourage the assumption that Wessely's critics are unreasonable and nasty, 3) spread lies and misinformation amongst patients who have good...
  17. Esther12

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    I just thought I'd see how the protocol changes were described on the PACE FAQ: (there now seems to only be an annoying link for this: https://www.qmul.ac.uk/wolfson/research-projects/current-projects/projects/#faq ) For their primary outcomes they say the change was : "before any data was...
  18. Esther12

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    If had a copy of it, I'd keep it. It could just be that whoever had it thought that it would be bad if it were circulated just to feed peoples' morbid curiosity?
  19. Esther12

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    I don't think that they have clearly said this - although they've implied it. This is what they said in their recovery paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776285/ 'Before the analysis' is different to 'before data was unblinded'. In 2011(after the Lancet paper) patient...
  20. Esther12

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Looks like Recovery Norge were promoting more junk-science. Norwegian journalists seem to love being provided with inspiring anecdotes!
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