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  1. NelliePledge

    Petition: Review treatment of people with ME in Scotland

    a formal letter to those who spoke clarifying the misunderstanding would at least ensure they were aware of the issue and maybe it would be appropriate to request a correction or footnote added to the public record of the hearing.
  2. NelliePledge

    United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

    to be fair I stopped reading after Sussex ME.........
  3. NelliePledge

    United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

    :wtf::wtf::wtf::wtf::wtf::wtf::wtf::banghead::banghead::banghead::banghead::banghead:
  4. NelliePledge

    David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

    Ministers have briefing provided by the civil servants in their departments using a range of sources. Also it is highly likely that the “training” would have been mentioned by RCGPs chief as part of the discussion she had with Brine in the run up to the debate. No doubt along the lines of “We...
  5. NelliePledge

    David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

    Best me to it @Barry both channelling @Andy this evening ;) ETA we should set up a proofreading business
  6. NelliePledge

    Does your ME cause problems with falling asleep at night at a normal time? (Without sleep meds)

    Good poll topic @leokitten Thinking back to a few years ago when I wasn’t aware I had gradual onset ME I’d say it was no general problem but I was definitely starting to get some tired but wired episodes. Since I got diagnosed after becoming more towards moderate on mild/moderate end of ME...
  7. NelliePledge

    UK Parliamentary debate today - Thursday 24th January 2019

    I wasn’t in a study I was just on a CFS/me clinic programme but I definitely told them what they wanted to hear rather than what I was actually doing and how I was really feeling because I didn’t want to be chucked off the programme I was trying to keep my employer sweet by doing the NHS...
  8. NelliePledge

    David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

    Wow they say practice makes perfect and @dave30th has had plenty of practice at shredding shoddy work by BPS proponents but this one is top notch :thumbup:
  9. NelliePledge

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

    As @phil_in_bristol was at the meeting maybe he could say something about what this means?
  10. NelliePledge

    METRIC (UK) Royal College of GPs' online course on ME/CFS

    Secondary gain my backside these people make me fume
  11. NelliePledge

    A general thread on the PACE trial!

    Maybe Mike Godwin would reach out to him to let him know that U.K. BPS lot have history of trying to get their old mates to back them publicly on Twitter. And if he’s been put up to it basically DB is just being ‘mugged off’. It seems unlikely DB just triggered all this off his own bat but if...
  12. NelliePledge

    UK Parliamentary debate today - Thursday 24th January 2019

    Right - Yes that’s why I made the sarcastic comment in the first place
  13. NelliePledge

    UK Parliamentary debate today - Thursday 24th January 2019

    Or at least that despite being the Health minister there’s next to nothing he can do about it...
  14. NelliePledge

    UK Parliamentary debate today - Thursday 24th January 2019

    Zactly or indeed anyone who’s seen a film like Steve Brine, or someone who knows someone’s cousin who has ME.......
  15. NelliePledge

    Adolescent’s descriptions of fatigue, fluctuation and payback in CFS/ME: interviews with adolescents and parents, 2018, Crawley et al

    Yuk I found it made me so sluggish and it wasn’t that effective after a while and I’m a middle aged chunky woman. I know drugs affect different people in different ways but I find it concerning they can’t come up with something better. Nortryptiline had less of a hangover for me so may be...
  16. NelliePledge

    UK Parliamentary debate today - Thursday 24th January 2019

    Right but some the things we’ve asked for aren’t necessarily going to need more money as they involve doing things differently. Different content for GP training, stopping GET will save money, supposedly money is already available for “the right research projects”. ETA or at least stopping...
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