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  1. NelliePledge
    Post

    Self-help books for ME/CFS: are they all bad?

    http://sallyjustme.blogspot.com/2014/08/index.html @Keela Too wrote her blog a few years back
    Post by: NelliePledge, Mar 7, 2024 in forum: General ME/CFS discussion
  2. NelliePledge
    Post

    Consider e-bikes

    I think I saw an electric tricycle when I was browsing around a few years ago. That would be a lot more stable although obviously a lot bulkier...
    Post by: NelliePledge, Mar 7, 2024 in forum: Home adaptations, mobility and personal care
  3. NelliePledge
    Post

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    I’d prefer Tripe :D
    Post by: NelliePledge, Mar 7, 2024 in forum: ME/CFS research
  4. NelliePledge
    Post

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Bearing in mind this started well before the old NICE guidelines were even considered for review the thinking is old hat just glossed over to give...
    Post by: NelliePledge, Mar 7, 2024 in forum: ME/CFS research
  5. NelliePledge
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Clear comms :thumbup: You can only work within the capacity that’s available to you.
    Post by: NelliePledge, Mar 7, 2024 in forum: Recruitment into current ME/CFS research studies
  6. NelliePledge
    Post

    UK: Physios for ME

    @PhysiosforME posted on Facebook they are looking for help translating their handout on how to work with PWME Already have French, Swedish, Dutch,...
    Post by: NelliePledge, Mar 7, 2024 in forum: News from organisations
  7. NelliePledge
    Post

    Acute and chronic CNS oxidative stress/toxicity during hyperbaric oxygen treatment of subacute and chronic neurological conditions, 2024, Paul G Harch

    Concerning
    Post by: NelliePledge, Mar 6, 2024 in forum: Other health news and research
  8. NelliePledge
    Post

    UK: Voting in government elections

    I had to get a postal vote long before I got diagnosed with ME because I used to have to travel away from home long days or overnight for meetings...
    Post by: NelliePledge, Mar 5, 2024 in forum: General disability topics and advocacy
  9. NelliePledge
    Post

    Pacing through Spo2 monitoring?

    Sorry probably should have realised :confused:
    Post by: NelliePledge, Mar 5, 2024 in forum: Other treatments
  10. NelliePledge
    Post

    Pacing through Spo2 monitoring?

    Hi @yannik what is sp02
    Post by: NelliePledge, Mar 5, 2024 in forum: Other treatments
  11. NelliePledge
    Post

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

    What does the body battery function involve @Amw66?
    Post by: NelliePledge, Mar 5, 2024 in forum: Monitoring and pacing
  12. NelliePledge
    Post

    Institute for Neuro-Immune Medicine

    Why do they always say CBT when they should be saying counselling
    Post by: NelliePledge, Mar 5, 2024 in forum: News from organisations
  13. NelliePledge
    Post

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

    There are definitely some issues with the daily balance scores and messages in my experience but I ignore those and just see it as a quick and...
    Post by: NelliePledge, Mar 5, 2024 in forum: Monitoring and pacing
  14. NelliePledge
    Post

    Pregabalin

    Sorry to hear that V.R.T. Sending hugs
    Post by: NelliePledge, Mar 5, 2024 in forum: Drug and supplement treatments
  15. NelliePledge
    Post

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

    @Keela Too how did you add steps? Just noting manually your number from another App? Or something tech?
    Post by: NelliePledge, Mar 5, 2024 in forum: Monitoring and pacing
  16. NelliePledge
    Post

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

    In a positive development the free version of the app has added a shorter version of the Norwegian developed Funcap questionnaire as a monthly...
    Post by: NelliePledge, Mar 5, 2024 in forum: Monitoring and pacing
  17. NelliePledge
    Post

    Pregabalin

    I note the Metro article says alcohol and SSRIs should be avoided when taking pregabalin. I was on fluoxetine when I was prescribed pregabalin…….
    Post by: NelliePledge, Mar 5, 2024 in forum: Drug and supplement treatments
  18. NelliePledge
    Post

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Sorry but for Person with ME the decision how much energy to spend on any given activity isn’t a simple effort v reward calculation described by...
    Post by: NelliePledge, Mar 3, 2024 in forum: ME/CFS research
  19. NelliePledge
    Post

    #NotJustFatigue

    As @Andy replied on that thread
    Post by: NelliePledge, Mar 3, 2024 in forum: News from organisations
  20. NelliePledge
    Post

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Surely they will be superceded by an App anyway especially for younger patient group. Obviously as with PACE manual the source of content and the...
    Post by: NelliePledge, Mar 3, 2024 in forum: ME/CFS research
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