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  1. NelliePledge

    UK House of Lords/ House of Commons Questions

    it’s the stated view of the department of health to parliament put out under the ministers name so if they then do something pro LP they will be going against what they’ve told parliament which is bad form
  2. NelliePledge

    Questions for Prof Simon Carding of the Quadram Institute, June 2019

    Obviously he was a speaker at Invest in ME so has a lot of contact with US ME researchers. Does he have any collaborations with U.K. based M.E. researchers from other Universities.
  3. NelliePledge

    Harvard ME/CFS Collaboration Symposium June 8th 2019

    I heard the 2 Nottingham Profs involved with the Harvard Group are going to this
  4. NelliePledge

    Sleep making symptoms worse

    When I was undiagnosed I used to go for days with very little sleep then I would spend the weekend in bed crashed out. Eventually I had to use caffeine to keep going. Then I would regularly be ill with a viral infection which I now consider to be a flare up of ME. In my experience sleep...
  5. NelliePledge

    Comprehensive stool test and Regenerus Lab

    They are going to be communicative they want people’s money. Point is is there actual benefit in what they are selling otherwise it is just snake oil
  6. NelliePledge

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    She said this about herself but presumably the person (I won’t say therapist don’t want to dignify them with that title) delivering the LP element expected it to work and participants likewise- it was being given under auspices of NHS which would have given credibility to patients.
  7. NelliePledge

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    :wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf: “Do gooders” who think they’re on your side are more dangerous than out and out snake oil merchants
  8. NelliePledge

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Seems strange that if it takes two minutes it isn’t done routinely by GPs before giving CFS diagnosis
  9. NelliePledge

    Sleep making symptoms worse

    @borko2100 i wouldn’t want to use stimulants as my experience with adrenaline nowadays is that it tips from a temporary boost into overload PEM making neuropathic pain the worst I have it and giving me the internal shaking which I only get at my worst. I can’t cope with caffeine at all either...
  10. NelliePledge

    Sleep making symptoms worse

    I think if I’ve only had a few hours sleep I tend to be running more on adrenaline especially if I have something to do that day. I used to have very little sleep and still get up and travel down to London and do long meetings and travel home again out of the house 13 hours. I think it’s...
  11. NelliePledge

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    I’m hoping there isn’t some way out for him of asking Chew-Graham to revise the wording and giving her 6 months to come up with something a la Cochrane. Cynical - moi o_O
  12. NelliePledge

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    Assuming the correction is adequate is a very good point. I’m hoping this will actually be corrected on the paper rather than in some little note hidden away in the dark recesses of the website
  13. NelliePledge

    Oxford Autoimmune Neurology Meeting 2019 - 5th & 6th June

    I think you’re mixing him up with someone else ;)
  14. NelliePledge

    Oxford Autoimmune Neurology Meeting 2019 - 5th & 6th June

    I like that this is happening in Oxford
  15. NelliePledge

    Advocacy context

    Yes Alzheimer’s Research UK are a good model for ME organisations @Cinders66 i follow them because of family connection with dementia. One of my parents had severe dementia for years. When they died we asked for donations to ARUK and raised a few hundred quid. When we first got involved in...
  16. NelliePledge

    US Senate passes historic resolution on ME/CFS

    So this is a much bigger deal than the UK Parliamentary debates?
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