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  1. NelliePledge
    Post

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/#post-506047 This is...
    Post by: NelliePledge, Nov 29, 2023 in forum: News from organisations
  2. NelliePledge
    Post

    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Jensen, Davis et al

    Does it say anywhere that a possible MS diagnosis has been ruled out for the ME/CFS participants ?
    Post by: NelliePledge, Nov 28, 2023 in forum: ME/CFS research
  3. NelliePledge
    Post

    Does anyone use/have a parcel box for deliveries?

    I spotted there are small versions 50l
    Post by: NelliePledge, Nov 28, 2023 in forum: Home adaptations, mobility and personal care
  4. NelliePledge
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I’m finding the apps judgment on my state as shown in the scores and accompanying comments pretty unhelpful eg for 48 hours I’ve had symptoms at...
    Post by: NelliePledge, Nov 27, 2023 in forum: Monitoring and pacing
  5. NelliePledge
    Post

    Approved Provider Scheme for ME/CFS clinics? Suggestion for discussion

    One way of doing it could be for the charities to approach other schemes such as the one in the first post to collaborate on an inspection regime....
    Post by: NelliePledge, Nov 27, 2023 in forum: UK clinics and doctors
  6. NelliePledge
    Post

    News from Germany

    Thanks to ME/CFS Research Foundation for signing the open letter
    Post by: NelliePledge, Nov 23, 2023 in forum: Regional news
  7. NelliePledge
    Post

    News from Austria and Switzerland

    Thanks to WE&ME Foundation for becoming the first Austrian organisation to sign the open letter.
    Post by: NelliePledge, Nov 23, 2023 in forum: Regional news
  8. NelliePledge
    Post

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    Moderation note Please keep posts on topic for the thread and within forum rules. Thanks
    Post by: NelliePledge, Nov 22, 2023 in forum: Work, Finances and Disability Insurance
  9. NelliePledge
    Post

    New Study: Gargling with Salt Water May Help Prevent Covid Hospitalization

    Not nasal gargling but one of the few helpful things suggested by the Dr when I had laryngitis (undiagnosed ME crash) was to gargle with salt...
    Post by: NelliePledge, Nov 20, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  10. NelliePledge
    Post

    News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

    Thanks to Grupa Wsparcia ME/CFS in Poland for joining our list of signatories to the open letter to Cochrane
    Post by: NelliePledge, Nov 20, 2023 in forum: Regional news
  11. NelliePledge
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks to Grupa Wsparcia ME/CFS from Poland for being the latest signatory and to @Mike Harley for help.
    Post by: NelliePledge, Nov 20, 2023 in forum: Petitions
  12. NelliePledge
    Post

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Email feedback on the document to feedback@meassociation.org.uk...
    Post by: NelliePledge, Nov 20, 2023 in forum: News from organisations
  13. NelliePledge
    Post

    Opinions on payments to participants in research

    Yes if it’s something that requires a time/travel commitment I was interviewed at home for a government research programme and got a £40 voucher...
    Post by: NelliePledge, Nov 20, 2023 in forum: Trial design including bias, placebo effect
  14. NelliePledge
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I’m using the basic visible I’m struggling a little bit with working out how best to do it when my sleeping pattern is haywire. Sometimes the...
    Post by: NelliePledge, Nov 20, 2023 in forum: Monitoring and pacing
  15. NelliePledge
    Post

    United Kingdom: ME Association news

    Update on ME Association letter about Royal College of Psychiatry website no reply but the content has been taken down. Look at this post on...
    Post by: NelliePledge, Nov 18, 2023 in forum: News from organisations
  16. NelliePledge
    Post

    News from Austria and Switzerland

    Thanks to Schweizerische Gesellschaft für ME & CFS for becoming the latest signatory to the open letter to Cochrane. Thanks to @Mike Harley...
    Post by: NelliePledge, Nov 18, 2023 in forum: Regional news
  17. NelliePledge
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Many thanks to Schweizerische Gesellschaft für ME & CFS for becoming our latest signatory organisation and adding a new country to our list .
    Post by: NelliePledge, Nov 18, 2023 in forum: Petitions
  18. NelliePledge
    Post

    Editorial: Mind the gap: integrating physical and mental healthcare for children with functional symptoms 2019 Heyman

    ‘definitive’
    Post by: NelliePledge, Nov 17, 2023 in forum: Other psychosomatic news and research
  19. NelliePledge
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    It’s a good thing for them they are not a public body because mishandling a complaint counts as maladministration and can be referred to the...
    Post by: NelliePledge, Nov 17, 2023 in forum: Petitions
  20. NelliePledge
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Great job @Andy
    Post by: NelliePledge, Nov 15, 2023 in forum: Recruitment into current ME/CFS research studies
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