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  1. Daisy
    Post

    UK: Physios for ME

    Publication date of their book is 21 August £26.99 with an e-book version....
    Post by: Daisy, Aug 1, 2023 in forum: News from organisations
  2. Daisy
    Post

    Using Heart rate monitoring to help with pacing.

    In our HRM pacing FB group PwME & LC tend to use 220 - age x 55% or 50% for the more severely affected. But also RHR plus 10 - 15. It's very...
    Post by: Daisy, May 4, 2023 in forum: Monitoring and pacing
  3. Daisy
    Post

    Action For ME Healthcare Services

    The invoices seem to be sent on a monthly cycle, so you might get it quickly (or not) depending on the date of your appointment. Sorry not to be...
    Post by: Daisy, Mar 11, 2023 in forum: UK clinics and doctors
  4. Daisy
    Post

    Action For ME Healthcare Services

    I've had a video appointment with Dr Barham. She was excellent, good understanding of M.E., didn't rush me, extremely thorough, comprehensive...
    Post by: Daisy, Mar 11, 2023 in forum: UK clinics and doctors
  5. Daisy
    Post

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

    December 2022 Guidance for Primary Care https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf
    Post by: Daisy, Dec 6, 2022 in forum: News from organisations
  6. Daisy
    Post

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    Great thread I'm in the process of putting together resources for health professionals as part of service development in Suffolk. We've...
    Post by: Daisy, Nov 21, 2022 in forum: General Advocacy Discussions
  7. Daisy
    Thread

    United Kingdom: Suffolk & North East Essex (SNEE) Service Development

    Work is continuing to develop a new M.E. and CFS Service in Suffolk and North East Essex. A survey has been created which is focused on...
    Thread by: Daisy, Nov 7, 2022, 0 replies, in forum: News from organisations
  8. Daisy
    Post

    The Future Challenges: Replenish-ME

    Full evaluation report is here https://www.weahsn.net/wp-content/uploads/2021/12/The-Future-Challenges-Replenish-ME-FINAL.pdf Has anyone heard...
    Post by: Daisy, Jul 7, 2022 in forum: General ME/CFS news
  9. Daisy
    Thread

    Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term conditions, 2021, Reid et al

    Consensus statement Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term...
    Thread by: Daisy, Nov 4, 2021, 26 replies, in forum: Other psychosomatic news and research
  10. Daisy
    Post

    Closed An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS

    Exactly @Sasha, excellent point, thank you.
    Post by: Daisy, Sep 25, 2021 in forum: Recruitment into current ME/CFS research studies
  11. Daisy
    Post

    Closed An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS

    I was involved in creating this survey. Thanks for your interest. I'd say complete the survey if you can. Part of the aim of the survey is to...
    Post by: Daisy, Sep 25, 2021 in forum: Recruitment into current ME/CFS research studies
  12. Daisy
    Post

    Closed An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS

    The survey has 40 questions, virtually all with tick boxes / radio buttons to make the questions easier to answer. There are some free text...
    Post by: Daisy, Sep 25, 2021 in forum: Recruitment into current ME/CFS research studies
  13. Daisy
    Post

    United Kingdom: Action for ME (AfME) news

    @MEMarge Sorry for the omission - the email was sent by Helen Winning, CEO of the M.E. Trust.
    Post by: Daisy, Sep 17, 2021 in forum: News from organisations
  14. Daisy
    Post

    United Kingdom: Action for ME (AfME) news

    I commented on this too, both directly to the M.E. Trust (I use the physio services) and via the online form. Had an email from the M.E. Trust...
    Post by: Daisy, Sep 17, 2021 in forum: News from organisations
  15. Daisy
    Post

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

    Probably going to hit 15,000 today, now at 14,755. I never ask F or F to sign petitions, but I did make an exception with this one.
    Post by: Daisy, Aug 25, 2021 in forum: Petitions
  16. Daisy
    Post

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

    Over 10,250 this morning, at this rate it is going to end up near to the petition to have the Guidelines reviewed.
    Post by: Daisy, Aug 22, 2021 in forum: Petitions
  17. Daisy
    Post

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

    Now over 5,000.
    Post by: Daisy, Aug 20, 2021 in forum: Petitions
  18. Daisy
    Post

    NICE Pathways - Flow Charts for CFS/ME

    Nice Pathways for "CFS/ME" appears to have been updated October 2020....
    Post by: Daisy, May 5, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  19. Daisy
    Post

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    I'm new to this too. A recent summary of research is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/ As recommended by the...
    Post by: Daisy, Mar 30, 2021 in forum: Immune: Autoimmune and Mast Cell Disorders
  20. Daisy
    Post

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    @Jonathan Edwards As I said a "histamine bucket" is simply how some patients refer to the way that they manage their symptoms. The doctor I'm...
    Post by: Daisy, Mar 30, 2021 in forum: Immune: Autoimmune and Mast Cell Disorders
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