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#severeme — Public Fediverse posts

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

  1. 6/

    “Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
    #severeme #mecfs #pwme #cfs
    @mecfs

  2. 6/

    “Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
    #severeme #mecfs #pwme #cfs
    @mecfs

  3. 6/

    “Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
    #severeme #mecfs #pwme #cfs
    @mecfs

  4. 6/

    “Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
    #severeme #mecfs #pwme #cfs
    @mecfs

  5. 6/

    “Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
    #severeme #mecfs #pwme #cfs
    @mecfs

  6. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  7. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  8. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  9. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  10. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  11. 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

  12. 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

  13. 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

  14. 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

  15. 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

  16. I thought this was very good (as usual from Amy Mooney). Notice the audio version.

    "Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

    batemanhornecenter.org/listen_

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

  17. I thought this was very good (as usual from Amy Mooney). Notice the audio version.

    "Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

    batemanhornecenter.org/listen_

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

  18. I thought this was very good (as usual from Amy Mooney). Notice the audio version.

    "Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

    batemanhornecenter.org/listen_

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

  19. I thought this was very good (as usual from Amy Mooney). Notice the audio version.

    "Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

    batemanhornecenter.org/listen_

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

  20. I thought this was very good (as usual from Amy Mooney). Notice the audio version.

    "Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

    batemanhornecenter.org/listen_

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

  21. CW: Spende / Severe ME

    Anlässlich des heutigen ME Awareness Day könntet ihr ja, sofern ihr könnt, was an Darya spenden, die unter schwerstem ME leidet und weiterhin finanzielle Hilfe gebrauchen könnte.

    Geht auch via Paypal: paypal.com/paypalme/JBuckley485

    gogetfunding.com/help-daryna-s

    #Spendenaufruf #SevereME

  22. What does #MillionsMissing mean?

    Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.

    Moderate cases cause more loss so that people can rarely leave the house.

    People with severe cases are in bed, rarely able to intereact with anyone.

    As ME/CFS gets worse a person's life shrinks more and more.

    The attached comic is by Kornelia Paulsen.

    8/n

    @mecfs @longcovid

    #MEcfs #LongCovid #SevereME #MEAwarenessDay #WorldMEDay

  23. CW: Severe ME, death, suicide

    Symptom severity ranges from mild to very severe. But even so-called "mild" ME/CFS has an enormous impact what a person can do.

    With severe ME/CFS the person is mostly housebound or completely bedbound.

    Anil van der Zee, a former professional dancer who now has severe ME, made this video:

    youtube.com/watch?v=XhrAhGkrGuQ

    Read the YouTube summary for more details

    5/n

    @mecfs @longcovid

    #MEcfs #PwME #SevereME #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis

  24. Managed a post on #MEAwarenessDay.
    Must nap now!

    Help me escape #abusers & have a chance at life. Dying of abuse/neglect - running out of time.
    $250wk negotiable for rent, room, land for caravan/cabin- anywhere safe & accessible. On #DSP can’t afford much. #Community help needed. Can you spare a room? Land? Time? Know someone who can?

    Info & help with costs:
    (I either write too much or not enough depending on who you ask so further info in fund & Canary article link)

    💸Fund: chuffed.org/project/161937-hel
    ☕️BMaC: buymeacoffee.com/Halcionandon
    🎁AmazonAU: amazon.com.au/hz/wishlist/ls/1
    ᯓ➤Beem: Halcionandon
    🗞️Article: “Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse”thecanary.co/global/world-anal

    #mutualaid
    #MECFS #PWME #SevereME #MyalgicEncephalomyelitis
    #MEAwarenessweek

    @mecfs
    @[email protected]
    @DisabilityJustice
    @[email protected]

  25. No fancy post for #MEAwarenessDay

    Help me escape #abusers & have a chance at life. Dying of abuse- running out of time.
    $250wk negotiable for rent, room, land for caravan/cabin- anywhere safe & accessible. On #DSP can’t afford much. #Community help needed. Info & help with costs:

    💸Fund: chuffed.org/project/161937-hel
    ☕️BMaC: buymeacoffee.com/Halcionandon
    🎁AmazonAU: amazon.com.au/hz/wishlist/ls/1
    ᯓ➤Beem: Halcionandon

    #mutualaid
    #MECFS #PWME #SevereME #MyalgicEncephalomyelitis
    #MEAwarenessweek

    @mecfs
    @mutualaid

  26. “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

    1/

  27. 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

    1/