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#pwme — Public Fediverse posts

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  1. The official English version of this sympathetic paper has now been published

    Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

    link.springer.com/article/10.1

    I have seen some praise for it.

    #SevereME #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

  2. The official English version of this sympathetic paper has now been published

    Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

    link.springer.com/article/10.1

    I have seen some praise for it.

    #SevereME #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

  3. 2/

    Alternative link that is only in English for the press release: "New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity"

    listserv.nodak.edu/cgi-bin/wa.

    #PwME #LongCovid #CFS #MEcfs #PostCovid

    @mecfs @longcovid

  4. 2/

    Alternative link that is only in English for the press release: "New research: muscle problems in post-COVID and ME/CFS cannot be explained by prolonged inactivity"

    listserv.nodak.edu/cgi-bin/wa.

    #PwME #LongCovid #CFS #MEcfs #PostCovid

    @mecfs @longcovid

  5. ME Research UK:

    A team or researchers in Regensburg, Bavaria have highlighted the lack of research around general anaesthesia in people with ME/CFS.

    Read more: tinyurl.com/y645xc34

    #mecfs #cfs #pwme @mecfs

  6. ME Research UK:

    A team or researchers in Regensburg, Bavaria have highlighted the lack of research around general anaesthesia in people with ME/CFS.

    Read more: tinyurl.com/y645xc34

    #mecfs #cfs #pwme @mecfs

  7. ME Research UK:

    Congratulations again to the team behind DISCOVER-ME, which includes Prof. Prof Simon Carding, who's ME Research UK-funded project played no small role in laying the groundwork for this €7.5million EU Horizon award. Read more tinyurl.com/8spcke28

    #mecfs #cfs #pwme @mecfs

  8. ME Research UK:

    Congratulations again to the team behind DISCOVER-ME, which includes Prof. Prof Simon Carding, who's ME Research UK-funded project played no small role in laying the groundwork for this €7.5million EU Horizon award. Read more tinyurl.com/8spcke28

    #mecfs #cfs #pwme @mecfs

  9. ME Research UK:

    The team at Griffith University have published more findings from their brain imaging research, reporting glymphatic dysfunction in people with ME/CFS, which was associated with greater severity of sleep dysfunction and cognitive impairment. bit.ly/4vNixld

    #mecfs #cfs #pwme @mecfs

  10. ME Research UK:

    The team at Griffith University have published more findings from their brain imaging research, reporting glymphatic dysfunction in people with ME/CFS, which was associated with greater severity of sleep dysfunction and cognitive impairment. bit.ly/4vNixld

    #mecfs #cfs #pwme @mecfs

  11. Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 20 - 26.

    s4me.info/threads/news-in-brie

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC

  12. Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 20 - 26.

    s4me.info/threads/news-in-brie

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC

  13. Australian registry reports poor health and wellbeing in people living with ME/CFS

    link.springer.com/article/10.1

    HRQoL = Health-Related Quality of Life

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  14. Australian registry reports poor health and wellbeing in people living with ME/CFS

    link.springer.com/article/10.1

    HRQoL = Health-Related Quality of Life

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  15. 7/
    From the report:

    “Almost two thirds of participants had started working in the recovery arena following their own recovery”

    So *major* conflicts on interest.

    #MEcfs #PwME #CFS
    @mecfs @longcovid

  16. 7/
    From the report:

    “Almost two thirds of participants had started working in the recovery arena following their own recovery”

    So *major* conflicts on interest.

    #MEcfs #PwME #CFS
    @mecfs @longcovid

  17. From Germany 🇩🇪

    Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  18. From Germany 🇩🇪

    Handgrip strength in children, adolescents, and young adults with suspected myalgic encephalomyelitis/chronic fatigue syndrome

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  19. Irish ME Trust social gatherings next week in KILKENNY, CORK, LIMERICK, DUBLIN & BRAY

    #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

  20. Irish ME Trust social gatherings next week in KILKENNY, CORK, LIMERICK, DUBLIN & BRAY

    #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

  21. 2/
    I don't believe a lot of the testimony in this area. For example, after you have done lightning process you are supposed to not mention any impairments you have, that is part of the process. Similarly many people have conflicts of interest from making money from such approaches.

    #PwME #CFS #ME @mecfs @longcovid #MEcfs #LongCovid

  22. 2/
    I don't believe a lot of the testimony in this area. For example, after you have done lightning process you are supposed to not mention any impairments you have, that is part of the process. Similarly many people have conflicts of interest from making money from such approaches.

    #PwME #CFS #ME @mecfs @longcovid #MEcfs #LongCovid

  23. (Australia)
    Emerge Australia has partnered with Edith Cowan University (ECU) to measure the impact of ME/CFS and long COVID

    eaecu.au1.qualtrics.com/jfe/fo

    Screenshot from latest Emerge Australia email bulletin

    #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE @mecfs @longcovid

  24. (Australia)
    Emerge Australia has partnered with Edith Cowan University (ECU) to measure the impact of ME/CFS and long COVID

    eaecu.au1.qualtrics.com/jfe/fo

    Screenshot from latest Emerge Australia email bulletin

    #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE @mecfs @longcovid

  25. Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  26. Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome undergoing general anesthesia: a retrospective matched-pair study

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  27. Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

    frontiersin.org/journals/immun

    #MEcfs #CFS #PwME #SevereME #SevereMECFS
    #SevereCFS #VerySevereME @mecfs

  28. Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

    frontiersin.org/journals/immun

    #MEcfs #CFS #PwME #SevereME #SevereMECFS
    #SevereCFS #VerySevereME @mecfs

  29. "Is diagnosis of CFS harder if symptoms are mild or fluctuate?"

    mypatientadvice.co.uk/knowledg

    "This article explores the complexities of diagnosing mild or fluctuating ME/CFS within the UK healthcare system" but still relevant to people elsewhere

    #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

    1/

  30. "Is diagnosis of CFS harder if symptoms are mild or fluctuate?"

    mypatientadvice.co.uk/knowledg

    "This article explores the complexities of diagnosing mild or fluctuating ME/CFS within the UK healthcare system" but still relevant to people elsewhere

    #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

    1/

  31. Check out the latest News in Brief (July 13 - 19) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

    s4me.info/threads/news-in-brie

    Anyone can read public forum posts but if you become a forum member then you can join the discussion 😁

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC #Science4ME #S4ME

  32. Check out the latest News in Brief (July 13 - 19) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

    s4me.info/threads/news-in-brie

    Anyone can read public forum posts but if you become a forum member then you can join the discussion 😁

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC #Science4ME #S4ME

  33. RE: mastodon.ie/@IrishMECFSAssocia

    As well as being quoted in this, I presented the journalist with various individuals who were available for interview including the two interviewed.
    #MEcfs #PwME #CFS @mecfs

  34. RE: mastodon.ie/@IrishMECFSAssocia

    As well as being quoted in this, I presented the journalist with various individuals who were available for interview including the two interviewed.
    #MEcfs #PwME #CFS @mecfs

  35. "For 15,000 Mainers with ME/CFS, the next step is in Congress’ hands"

    pressherald.com/2026/07/19/for

    "Myalgic encephalomyelitis/chronic fatigue syndrome is an illness as debilitating as it is overlooked."

    Article urging Congress to fund the ME/CFS Research Roadmap which was approved by NIH in 2024 but still not funded.

    @mecfs

    #MEcfs #PwME #Research #NIH #USPol