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  1. NelliePledge

    Dehydration-like feeling next day after exertion?

    Do others with dry eyes use drops or the gel type for nighttime If not worth trying I find it is pretty good at relieving the dryness.
  2. NelliePledge

    Dehydration-like feeling next day after exertion?

    Dry eyes is a very common symptom associated with getting older lso I reckon it’s difficult for any of us 50 plus to definitely attribute it to ME. other than that I definitely get much more thirsty during PEM, not surprisingly needing to go to the loo a lot more too, sometimes quite soon after...
  3. NelliePledge

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Also another practical reason why things don’t just go ahead straight after a meeting. bearing in mind they cover a lot of guidelines and regularly have drafts and new guidelines going live they will have to schedule publications to manage their comms workload.
  4. NelliePledge

    ME/CFS services in the United Kingdom

    This is the problem pacing up rather than pacing yourself
  5. NelliePledge

    UK: The Neurological Alliance: "My Neuro" survey, 2021 (close 6th Feb 2022)

    Well they have ME listed so I filled it in i think important to feed in to highlight the absence of support compared to other conditions
  6. NelliePledge

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    No they’re not because in their eminent opinions the emperor really is wearing a marvellous suit of new clothes, and if they keep insisting us plebs might believe them
  7. NelliePledge

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Struck me that a change to the title would improve the accuracy of this piece Care for people with CFS/ME - based on evidence which is low/very low quality
  8. NelliePledge

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Clinical assessment = filling in their BS questionnaires and having an appointment with a physio or ot where you basically go over the questionnaire again
  9. NelliePledge

    Fundraising for UK ME charities in memory of Graham McPhee

    Donated ME Research U.K.
  10. NelliePledge

    ‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME), 2020, Farrell Delaney

    Well done to the author. I get that it is an academic piece and the language is pitched at their academic tutors for the purpose of getting a PhD this isn’t a criticism of the individual but my reaction is always why can’t these groups use straightforward language.
  11. NelliePledge

    United Kingdom: ME Association governance issues

    Agreed. Before this i would have said they could have tested the reaction to a prospective patron by having an article about their involvement in the ME community in the magazine and seeing how people responded. Given the issues this time I think they probably do need a more formal approach to...
  12. NelliePledge

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    I spotted that the petition has gone over 22,000 been very slow recently but still the biggest number on a U.K. ME petition I think. https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now
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