mea

  1. Hutan

    2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

    Posts moved from the News from the UK MEA thread. Links to the UK UK MEA material - What you need to know about ME/CFS Booklet Video - Youtube
  2. Trish

    Open personal letter to the trustees of the UK ME Association, December 2024

    I have just sent the following personal letter to the Trustees of the UK ME Association. Or at least to some of them. I had 2 email addresses and guessed the rest - at least 2 have bounced back. __________________ To the trustees of the ME Association, re concerns about the MEA trusteeship...
  3. J

    VuMedi: Dr Shepherd talks about the overlaps between Long Covid and ME/CFS in a video aimed at healthcare professionals

    https://meassociation.org.uk/2024/08/vumedi-dr-shepherd-talks-about-the-overlaps-between-long-covid-and-me-cfs-in-a-video-aimed-at-healthcare-professionals/ VuMedi (where the video features) describes the platform as “a video education platform for doctors. Over 450,000 doctors use VuMedi to...
  4. Trish

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    https://www.elaros.com/ ELAROS is a private company that works with the NHS to provide digital apps and websites, including patient apps where they can fill in PROMs, and access to these by clinicians. The initial aim, I think is for it to be used particularly for Long Covid clinics to track...
  5. MrMagoo

    ME Association funds development of new protocol for Dysautomnia

    https://meassociation.org.uk/2024/06/me-association-professor-manoj-sivan-to-develop-new-protocol-for-dysautonomia-in-me-cfs-and-long- sorry Dont know how to copy the text
  6. Dx Revision Watch

    ME Association: iterations of objectives between 2021 and 2023

    Wasn't sure where to put this but I wanted to note the following: It's not known whether or when the ME Association plans to update its Articles of Association to reflect a change in its objectives...
  7. Sly Saint

    UK ME Association documents on pacing

    Moved posts In light of recent discussions on 'pacing' and 'energy management', here https://www.s4me.info/threads/bias-misleading-information-and-lack-of-respect-for-alternative-views-have-distorted-perceptions-of-myalgic-encephalomyelitis-cfs-2017-goudsmit.32906/#post-470664 I've had a look...
  8. Shadrach Loom

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

    Split from the 2021-2 thread From today’s Politico newsletter: Shadow Work and Pensions Secretary Jonathan Ashworth will deliver a speech to the Center for Social Justice think tank this morning, pledging reforms to out-of-work support. The Labour plans involve allowing people on sickness...
  9. Andy

    Brain fog of post-COVID-19 condition and Chronic Fatigue Syndrome, same medical disorder? 2022 Azcue et al

    Abstract Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is characterized by persistent physical and mental fatigue. The post-COVID-19 condition patients refer physical fatigue and cognitive impairment sequelae. Given the similarity between both conditions, could it be...
  10. Dolphin

    The ME Association Clinical & Research Guide 2022: Children & Adolescents

    ME Association The ME Association Clinical & Research Guide 2022: Children & Adolescents - available as a free download ME/CFS has been reported in children as young as five, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022...
  11. Wyva

    Co-morbidities - prevalence in people with ME/CFS

    Post copied from this thread: EDS, hypermobility, and the link, if any, to ME/CFS I didn't know where to post this, but the ME Association had an online survey about common health conditions in pwME. The current result: Which of the following conditions, which are more common, or appear to be...
  12. Andy

    The Purple Book, ME/CFS Clinical and Research Guide, UK MEA, Shepherd

    Available at http://amzn.eu/d/gkyHiz0
  13. A

    Valerie Eliot Smith charity complaint

    From Twitter Eta couldn't post on NICE guidelines threads as they are closed
  14. J

    United Kingdom: ME Association governance issues

    2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts in this post, notice of his withdrawal here 2024 AGM, company documents, trustees, historic governance issues discussion starts here ********* This post copied and many subsequent posts moved from United Kingdom: ME...
  15. Andy

    Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation

    "The ME Association is the only M.E. charity involved in the collection of post mortem tissue samples from people diagnosed with the disease in the UK. Our long-term aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for...
  16. Sly Saint

    Guest Blog MEA: The Shame

    https://meassociation.org.uk/2021/06/guest-blog-the-shame/
  17. Andy

    ME Association Statement on Exercise in ME/CFS and Long Covid, April 2021

    "The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online. .... Graded Exercise...
  18. Peter T

    United Kingdom: ME Association news

    Copied from this thread The British ME Association are requesting people to send them accounts of their experiences of health and social care as part of a planned campaign looking at good practice and the new NICE guidelines to roll out in ME Awareness Week in May and beyond. See...
  19. Andy

    The ME Association: We are seeking a research correspondent to join our team!

    https://meassociation.org.uk/2020/09/the-me-association-we-are-seeking-a-research-correspondent-to-join-our-team/
  20. J

    Now Available: The 2020 ME Association ME/CFS/PVFS Clinical and Research Guide!

    The ME Association has just published it's latest guide. https://meassociation.org.uk/2020/08/now-available-the-2020-me-association-me-cfs-pvfs-clinical-and-research-guide/
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