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#severeme — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.

  1. Ror Preston:

    Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

    New @wecrunchme visual on this topic 💙

    Link to this new visual on the CrunchME website, along with notes on sources and methodology:

    crunchme.org/visuals/2026-09-1

    #SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs

  2. Ror Preston:

    Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

    New @wecrunchme visual on this topic 💙

    Link to this new visual on the CrunchME website, along with notes on sources and methodology:

    crunchme.org/visuals/2026-09-1

    #SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs

  3. Ror Preston:

    Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

    New @wecrunchme visual on this topic 💙

    Link to this new visual on the CrunchME website, along with notes on sources and methodology:

    crunchme.org/visuals/2026-09-1

    #SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs

  4. Ror Preston:

    Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

    New @wecrunchme visual on this topic 💙

    Link to this new visual on the CrunchME website, along with notes on sources and methodology:

    crunchme.org/visuals/2026-09-1

    #SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs

  5. Ror Preston:

    Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

    New @wecrunchme visual on this topic 💙

    Link to this new visual on the CrunchME website, along with notes on sources and methodology:

    crunchme.org/visuals/2026-09-1

    #SevereME #MEcfs #PwME #CFS #MyalgicEncephalomyelitis @mecfs

  6. 3/
    “care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  7. 3/
    “care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  8. 3/
    “care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  9. 3/
    “care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  10. 3/
    “care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

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

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

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

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

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

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

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

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

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

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

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

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

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

    link.springer.com/article/10.1

    Screenshot from latest Science for ME weekly update

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

  16. 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

  17. 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

  18. 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

  19. 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

  20. 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

  21. 18/

    May is #MyalgicEncephalomyelitis (ME) Awareness Month.

    You can help to raise awareness and understanding by retweeting and/or
    liking this 7 minute 8 second-video made on a young UK woman with
    severe ME
    youtube.com/watch?v=cPH3kKkEYAI

    Day 18
    #SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
    @mecfs

  22. 18/

    May is #MyalgicEncephalomyelitis (ME) Awareness Month.

    You can help to raise awareness and understanding by retweeting and/or
    liking this 7 minute 8 second-video made on a young UK woman with
    severe ME
    youtube.com/watch?v=cPH3kKkEYAI

    Day 18
    #SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
    @mecfs

  23. 18/

    May is #MyalgicEncephalomyelitis (ME) Awareness Month.

    You can help to raise awareness and understanding by retweeting and/or
    liking this 7 minute 8 second-video made on a young UK woman with
    severe ME
    youtube.com/watch?v=cPH3kKkEYAI

    Day 18
    #SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
    @mecfs

  24. 18/

    May is #MyalgicEncephalomyelitis (ME) Awareness Month.

    You can help to raise awareness and understanding by retweeting and/or
    liking this 7 minute 8 second-video made on a young UK woman with
    severe ME
    youtube.com/watch?v=cPH3kKkEYAI

    Day 18
    #SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
    @mecfs

  25. 18/

    May is #MyalgicEncephalomyelitis (ME) Awareness Month.

    You can help to raise awareness and understanding by retweeting and/or
    liking this 7 minute 8 second-video made on a young UK woman with
    severe ME
    youtube.com/watch?v=cPH3kKkEYAI

    Day 18
    #SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
    @mecfs

  26. 8/
    May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

    It was made by a woman, Laurel, with severe ME @dreamsatstake .  Living with Severe ME (5 minutes 13 seconds)
    youtu.be/LvweCk44WHs

    Day 8

    #SevereME #SevereCFS
    #mecfs
    @mecfs

  27. 8/
    May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

    It was made by a woman, Laurel, with severe ME @dreamsatstake .  Living with Severe ME (5 minutes 13 seconds)
    youtu.be/LvweCk44WHs

    Day 8

    #SevereME #SevereCFS
    #mecfs
    @mecfs

  28. 8/
    May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

    It was made by a woman, Laurel, with severe ME @dreamsatstake .  Living with Severe ME (5 minutes 13 seconds)
    youtu.be/LvweCk44WHs

    Day 8

    #SevereME #SevereCFS
    #mecfs
    @mecfs

  29. 8/
    May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

    It was made by a woman, Laurel, with severe ME @dreamsatstake .  Living with Severe ME (5 minutes 13 seconds)
    youtu.be/LvweCk44WHs

    Day 8

    #SevereME #SevereCFS
    #mecfs
    @mecfs

  30. 8/
    May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.

    It was made by a woman, Laurel, with severe ME @dreamsatstake .  Living with Severe ME (5 minutes 13 seconds)
    youtu.be/LvweCk44WHs

    Day 8

    #SevereME #SevereCFS
    #mecfs
    @mecfs