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  1. Esther12

    Patients given unsafe medical implants

    Some of the responses from medical professionals I saw when these problems were first coming to light were worrying. It's like they were in denial about the problems because they didn't want to acknowledge they were part of a broken system.
  2. Esther12

    Concerns about Cochrane

    I hadn't seen that, and thought it was interesting. A few bits seemed relevant to us. I've been interested by the way that some PACE defenders have tried to use checklists as a way of avoiding critical thinking:
  3. Esther12

    General statement from British Psychological Society & Royal College of Psychiatrists makes it sound like they'd be on-side on PACE- expect it's BS.

    Researching, practising, and debating mental health care Sarb Bajwa Niall Boyce Wendy Burn https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(18)30438-3/fulltext To me this looks like more empty blather from those unwilling to speak out about bad behaviour from their colleagues...
  4. Esther12

    Carol Monaghan has applied for a debate in UK House of Commons main chamber

    Great news... hopefully that will give them time to cover some of the many problems we've faced. So many things I want to see get raised!!
  5. Esther12

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    It was Sharpe who used the 'undeserving sick' quote, and there was an implied criticism of it. I think that they do talk about the need to challenge these prejudices, but then they continue to try to use them to dismiss patients raising concerns about things like PACE. Actions matter more than...
  6. Esther12

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    I'm sure he'd think of himself as doing that, ignoring the way that his treatment of ME/CFS patients raising concerns about things like PACE helps to stigmatise MH patients and presents them as undeserving of honest discussion and debate.
  7. Esther12

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Thanks Suzy. I expect that it was very largely your work which let us dodge a bullet here - I'm very grateful. Particularly as now you've retired I don't think we would have been able to organise a response to Dua's proposal being accepted that would have been half as good as one you'd led...
  8. Esther12

    David Tuller: Trial By Error: Some Thoughts About NICE

    I'm not sure what I think about the NICE process, I think I'm feeling more negative about it than Tuller tbh, but I think that blog does a really good job of summarising lot of the issues surrounding the NICE review to people, and therefore works as something that could help introduce people to...
  9. Esther12

    Norway: ME Forening (ME Association)

    LOL at a systematic review of the evidence for LP being conducted by... Phil Parker: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=104336&VersionID=1166431
  10. Esther12

    Adolescent and parent factors related to fatigue in paediatric multiple sclerosis and CFS: A comparative study (2019) Carroll, Chalder, Moss-Morris

    The abstract made it sound like another study that tries to confuse association and causation where their data didn't really support their narrative, but I stopped reading before getting to their results... too many infuriating unfounded claims to read before bed in just the intro. Funded by MS...
  11. Esther12

    News from Scandinavia

    edit: sorry - just noticed Inox posted this article already. Ingrid Helland has also said how excited she was about the SMILE results showing LP was effective (presumably she didn't notice that for the primary outcome specified at the start of the trial there was no difference between groups)...
  12. Esther12

    U.K. House of Commons Science committee public can propose topics by 29 Nov

    Would be good to get some PACE relevant stuff raised.
  13. Esther12

    David Tuller: Trial By Error: How to Avoid Ethical Review

    Thanks so much to David for keeping pushing with this. It's so infuriating. Just to remind people of the BMJ's deceptive presentation of this issue to COPE: https://publicationethics.org/case/service-evaluation-research-controversial-area-medicine
  14. Esther12

    Unrest film - Jen Brea

    This is from a year ago. The panel was changed after protest.
  15. Esther12

    Information about NICE committee members

    Thanks @Michiel Tack - I feel like I've been struggling to find the time to read anything recently, but this is definitely book-marked for when I have a chance.
  16. Esther12

    Cochrane ME/CFS GET review temporarily withdrawn

    Just looked at Kelland's twitter feed, and saw she was sharing congratulations of Sharpe:
  17. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    No. So would Shepherd have been instead of Chris Burton or Mike Beadsworth?
  18. Esther12

    David Tuller: Trial By Error: An Australian Exchange with Professor Sharpe

    No, they never seem interested in naming individuals. Then they'd have to engage in debate about the truth about the individual critics that they try to smear as a vague group.
  19. Esther12

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    There are loads of good and informed patients that people will have never heard the names of. I don't know the other lay members on the committee, but that doesn't surprise me. Also, I do think that there's some reason to be careful about the right to privacy of those who did volunteer. The...
  20. Esther12

    David Tuller: Trial By Error: Yet Another Letter About the Lightning Process Study

    Nice one. This SMILE trial stuff burns me up though... reading a summary like this makes me twitch with frustration. I just can't believe how broken British medical research is. A bit of a typo here? Prospectively registered?
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