Search results

  1. NelliePledge

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Can I ask is there anyone here with moderate ME who can get out of the house driving themselves occasionally who has had PIP claim accepted. Please message me if you don’t want to discuss on thread
  2. NelliePledge

    Hoarse raspy voice- how and why?

    Really interesting @Karen Kirke i get croaky voice too and definitely find myself tensing muscles when pain is worse so I will put your links on my to do list. Thanks
  3. NelliePledge

    [MUS] and experiences with healthcare among emerging adults exposed to multiple types of potentially traumatic events 2024 Owens et al

    Were these participants self reporting as having a psychosomatic condition? Were they aware or unaware of the researchers definition of Medically Unexplained
  4. NelliePledge

    Catastrophizing, time to ditch the term? - ME/CFS Skeptic blog

    Great job @ME/CFS Skeptic thanks for spotlighting this issue
  5. NelliePledge

    United Kingdom: ME Association news

    Good to see ME Assn recognising these researchers pity they didn’t give them £90k to test FUNCAP on uk people with ME/cFS so it could be promoted for use in the NHS.
  6. NelliePledge

    What stops you getting involved in Patient and Public Participation in research?

    Obviously for people who haven’t used Teams or similar then there would be a need for people who could give support, directing to tutorials or whatever is available to familiarise.
  7. NelliePledge

    2024 Stanford MECFS meeting

    Is there a link to a web page for this information?
  8. NelliePledge

    What stops you getting involved in Patient and Public Participation in research?

    With collaboration tools like teams it should be possible to do groups of people to discuss topics, comment on documents. It’s what they use at my old employer to work on projects.
  9. NelliePledge

    Hoarse raspy voice- how and why?

    Got this croaky throat again today at the end of a call after writing my earlier post- typical
  10. NelliePledge

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Presumably to be diagnosed FND there was involvement from Neurology specialists who will have written some statement about him.
  11. NelliePledge

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    In all seriousness As it is German research team I really hope someone is going to flag it up to the late night comedian guy
  12. NelliePledge

    What stops you getting involved in Patient and Public Participation in research?

    That’s terrible @Kitty, not surprising unfortunately
  13. NelliePledge

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    Agree with @Peter Trewhitt and @Blueskytoo im impressed by AFME response. Well done @Trish in particular for such thorough drafting. It shows what organisations can do in response to well thought through feedback when they take feedback sufficiently seriously.
  14. NelliePledge

    Hoarse raspy voice- how and why?

    Yes Croaky throat when I’ve done too much. When I was still trying to keep working on phone calls I would say if I start croaking it is a sign I need to stop. Not so frequent now but I have some calls that last about an hour eg my counselling session and if I’m on worse form I will be croaking...
  15. NelliePledge

    Toward the emancipation of “medically unexplained” and energy-limiting conditions..., 2024, Hunt

    I assume the British Psychological Society predates the ‘biopsychosocial model’
  16. NelliePledge

    Long COVID among healthcare workers: a narrative review of definitions, prevalence, symptoms, risk factors and impacts, Dempsey et al, 2024

    For anyone who isn’t aware Madan is an author of the 2006 guidelines on occupational health for CFS/ME through the NHS occupational health network Which as far as I can tell has not been superceded to reflect NICE 206 https://www.nhshealthatwork.co.uk/images/library/files/Clinical...
  17. NelliePledge

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Possibly would have been better to be less specific then and get something out on a video or blog instead it seems like an odd event to be releasing any details of something that will inevitably raising hopes. But the hope will likely not be relevant for many/most.
Back
Top Bottom