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  1. NelliePledge

    The ME Patient Foundation

    Wondering what projects they have in mind I couldn’t see anything about that
  2. NelliePledge

    Europe: EUROMENE

    Even with gradual onset mild ME it isn’t a question of being fatigued and gradually getting worse. The viral flu type symptoms sore throats swollen glands were there too just not so severe to be incapacitated for more than a couple of weeks at a time.
  3. NelliePledge

    The ME Patient Foundation

    Emma Joy is on social media
  4. NelliePledge

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    They just see it as a white lie for our benefit. Unlike the white lies and distractions I used when communicating with my parent who had severe dementia this is not compassionate in the interest of the other person. It is prioritising their own unhelpful beliefs over and above the lived...
  5. NelliePledge

    UK: Social prescribing on the NHS (and possible implications for ME/CFS services)

    I think it could be argued that if funding for community groups hadn’t been squeezed so hard this “medicalised” approach wouldn’t be needed because people would already be getting support without it needing the approval of the NHS.
  6. NelliePledge

    UK House of Lords/ House of Commons Questions

    In my area which was in phase 1 or 2 of the MUS roll out the existing hospital clinic which did PACE lite rather than full on GET closed and the service joined up with community pain service. We’ve had a couple of people on the local Facebook group in the last couple of months saying they are...
  7. NelliePledge

    Supplements and activity designed to improve circulation - an experiment.

    Limeade was my favourite. We used to have two bottles of pop delivered every week when I was a kid. I think it was called Corona. Some weird flavours. Err I have to confess I like haggis, black pudding and stuff like that and I have actually bought brains faggots this decade.
  8. NelliePledge

    Supplements and activity designed to improve circulation - an experiment.

    the appetite thing is weird isnt it i go between feeling mildly nauseous and not hungry in the morning and eating a massive meal and some grazing in the evening. i would eat earlier but I just cant face it and I reckon that my appetite is worse the worse I feel. but i have enough appetite in...
  9. NelliePledge

    UK House of Lords/ House of Commons Questions

    in their world IAPT is it for MUS - they think it is relevant - that its Emperors new clothes is what needs to be brought home to the politicians
  10. NelliePledge

    Supplements and activity designed to improve circulation - an experiment.

    the bacon and black pudding french stick sounds very appealing @Wonko did you manage to have that? happy birthday for yesterday Since I cut back on processed food I find a lot of products are too sweet for my taste- tried gluten free bread and that was very sweet. I had some crisps at...
  11. NelliePledge

    Posture support - does it work or make things worse in the long run?

    i was a huncher even as a teenager I remember my mum poking me sharply in the back on numerous and saying stop slouching you'll get round shoulders - I already had round shoulders- its a lot easier said than done to straighten up I find
  12. NelliePledge

    Heart Rate Variability and ME/CFS

    dont all Geordies wear Tshirts in the winter
  13. NelliePledge

    New video: Children with ME

    Shared on Facebook through local MillionsMissing page.
  14. NelliePledge

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

    What more does he think should be done to get researchers and clinicians involved in ME. I understand IIME funded 8 young U.K. researchers to go to the London event although not all attended due to illness. How do we get more interest.
  15. NelliePledge

    L.P. reported mentioned in parliament in May?

    This proves exactly why @dave30th work on challenging this ridiculous study is so important . Where proponents of LP are even prepared to use the fact that LP was mentioned in a PQ to try to justify it despite the PQ actually flagging issues with the study. Tthe person probably didn’t even read...
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