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  1. NelliePledge

    A proposal for ME Action: a commitment to evidence-based medicine

    That’s what I said in the second sentence @Trish. It’s not about the EBM label it’s about actually having sound evidence. Maybe I’m dancing on a pin head but the BPS folks are no doubt all claiming they’re doing EBM.
  2. NelliePledge

    Open Norway: Haukeland university hospital (Fluge/Mella) seeking ME-patients nearby Bergen to wear fitbit for 6 months

    Hopefully this will set a standard for objective measures that future studies will need to follow in order to have a shred of credibility.
  3. NelliePledge

    A proposal for ME Action: a commitment to evidence-based medicine

    Aren’t we just saying we want to be clear that the statement definitely does not mean that we think the organisation should support the current flavour of the month known as Evidence Based Medicine or EBM. We simply think it should support basing medical practice on sound evidence. Can’t that...
  4. NelliePledge

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    And unless i missed it the statement was silent on taking the topic out of the mental/behaviour group
  5. NelliePledge

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    Much as NICE Cochrane are saying we now accept the current situation isn’t sustainable but please put up with something unfit for purpose that we will leave in place for a further extended period while we try to come up with something better.
  6. NelliePledge

    A Life Hidden - Blog posts by Naomi Whittingham

    Or for a trip back to the dark ages
  7. NelliePledge

    A Life Hidden - Blog posts by Naomi Whittingham

    They aren’t a charity are they? I thought they’re a “professional” group for people who work in CFS services.
  8. NelliePledge

    ME/CFS services in the United Kingdom

    I’m not convinced there’s any benefit of going out of area for any NHS CFS clinic even if one might have acquired a slightly better reputation than another. The negative effects of travel would need to be a big consideration.
  9. NelliePledge

    ME/CFS services in the United Kingdom

    Absolutely. Currently It’s risky because you can very easily get drawn in to doing more than you can manage. I thought I was going into it eyes open but I still ended up doing a lot more than normal and struggling then was in invidious position of just telling them what they wanted to hear. I...
  10. NelliePledge

    ME/CFS services in the United Kingdom

    @Trish also if you’re still employed & needing reasonable adjustments or on long term sick your employers will have an expectation that you’re taking available NHS treatment options. Applying for ill health retirement was similar to applying for benefits. The Pension Scheme Medical Adviser...
  11. NelliePledge

    Dr Myhill’s complaint to GMC about PACE authors.

    This GMC page might help. Before they investigate there is the first stage where they decide whether there is anything within their remit to investigate. https://www.gmc-uk.org/concerns/information-for-patients/how-we-handle-concerns
  12. NelliePledge

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    @Natalie heard back from ME Association that it’s scheduled to go up on their FB and Twitter at 12 noon today
  13. NelliePledge

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

    Maybe something I would have been able to contribute to when I was healthy but I just can’t concentrate well enough to begin to get my head round the material.
  14. NelliePledge

    ME/CFS services in the United Kingdom

    Well it’s complicated by the introduction of IAPT and different arrangements in different parts of the country there is still a service that’s supposed to cover CFS in my area but it’s part of the community pain service and the CFS clinic was closed about 18 months ago but was still doing...
  15. NelliePledge

    Comments Simon Wessely revisits some of his early work on chronic fatigue syndrome, journal article (2012) Wessely

    Ok thanks I don’t expect you to say more it’s good they were actively doing something :thumbup:
  16. NelliePledge

    Comments Simon Wessely revisits some of his early work on chronic fatigue syndrome, journal article (2012) Wessely

    It’s ok saying it behind the scenes if you’re actually trying to influence change behind the scenes otherwise it’s basically just moaning and abdicating responsibility.
  17. NelliePledge

    Dr Myhill’s complaint to GMC about PACE authors.

    They - Dr Myhills team- are very dogged on this. Credit to them for their persistence.
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