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#severeme — Public Fediverse posts

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

  1. ME Research UK:

    An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.

    Read more: tinyurl.com/yc264wbm

    #severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

  2. For severe ME day

    ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!

    meassociation.org.uk/csme

    #VerySevereME #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

  3. 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

  4. 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

  5. RE: troet.cafe/@Lalelilolu/1168740

    @IrishMECFSAssociation

    Do you have followers from Germany, Austria or Switzerland (who know s.o.) with severe ME? The link below might be interesting.

    What it's about:

    "The Severe & Very Severe ME Research Registry is an independent, private initiative aimed at making people with severe and very severe ME in German-speaking countries (Germany, Austria and Switzerland) more accessible to scientific research."

    #SevereME
    #VerySevereME
    #mecfs

  6. ME Research UK:

    "There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. tinyurl.com/efww9ntj

    #mecfs #pwme #severeme #verysevereme @mecfs

  7. It would be wonderful if similar facilities were available in other countries

    Specialised care for severely affected ME/CFS patients

    tandfonline.com/doi/full/10.10

    Screenshot from AMMES June 2026 newsletter

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

  8. 27/

    May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

    You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

    Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics dialogues-mecfs.co.uk/films/se

    @mecfs #mecfs

  9. Very sad to report that longtime mutual journalist and author @bridget_oshea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS.

    I’ve lost so many friends and acquaintances to #SevereME and #VerySevereME, especially during the last 8 years when I became Severe.

    Will remember you always, Bridget. 💙🕯️

    dignitymemorial.com/obituaries

  10. Rutsche wohl endgültig in very severe ab. Habe gestern nach über drei Wochen zum ersten Mal geduscht. Bin heute komplett gecrasht. Kann kaum sprechen. Der ganze Körper ist bleischwer. Muss im Liegen essen.

    Ich hab solche Angst.
    #MEcfs #severeME #verysevereME

  11. 27/

    May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

    You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

    Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. my mum) Discusses various distressing topics dialogues-mecfs.co.uk/films/se Day 27

    #mecfs
    @mecfs

  12. Bateman Horne Center:

    We’re excited to share the Caregiving Resource Guide — a collection of practical tips from experts and caregivers who spoke at the Severe #MECFS Caregiving Webinar Series. Many suggestions can also empower those who don’t have a dedicated caregiver.

    bit.ly/3Yvek6W

    @severeme
    #SevereME #SevereMECFS
    #SevereCFS #VerySevereME
    @mecfs
    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

  13. A veces se hace duro ver tanta vida fuera, dejando pasar la mía entre estas paredes.
    Y a la vez agradecer poder estar al día de cosas que nunca vería o sabría si no fuera por una pantalla.
    Hace años el aislamiento debería ser aún más duro.

    #EncefalomielitisMialgicaSevera #EncefalomielitisMialgica #MEcfs #EMsfc #SFCem #severeME #encamada #confinamiento #pacientes #cronicos #bedbound #housebound #aislamiento #isolation #soledad #lonely #Lonelines #autoimmunes #Metabólicas #autoimmune

  14. “In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME” by David Tuller DrPH

    t.ly/77JIT

    About the desperate situation of #severeME patients not getting help from hospitals with necessary feeding tube fitting.

    @mecfs

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

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  15. Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients

    t.ly/6R73W

    The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish

    #SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
    #SEID #NeuroME @severeme #severecfs

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