#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.
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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/
“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/
“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/
“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/
“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/
“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.” -
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.” -
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.” -
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.” -
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.” -
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"
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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"
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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"
-
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"
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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"
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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: https://www.paypal.com/paypalme/JBuckley485
https://gogetfunding.com/help-daryna-survive-in-berlin-for-the-next-6-months/
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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
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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:
https://www.youtube.com/watch?v=XhrAhGkrGuQ
Read the YouTube summary for more details
5/n
#MEcfs #PwME #SevereME #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis
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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: https://www.chuffed.org/project/161937-help-anna-escape
☕️BMaC: https://www.buymeacoffee.com/Halcionandon
🎁AmazonAU: https://www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
ᯓ➤Beem: Halcionandon
🗞️Article: “Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse”https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/#mutualaid
#MECFS #PWME #SevereME #MyalgicEncephalomyelitis
#MEAwarenessweek
@mecfs
@[email protected]
@DisabilityJustice
@[email protected] -
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: https://www.chuffed.org/project/161937-help-anna-escape
☕️BMaC: https://www.buymeacoffee.com/Halcionandon
🎁AmazonAU: https://www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
ᯓ➤Beem: Halcionandon#mutualaid
#MECFS #PWME #SevereME #MyalgicEncephalomyelitis
#MEAwarenessweek
@mecfs
@mutualaid -
Just one week to go with Lee Colligan’s marathon 2500km walk around Ireland in memory of his brother and in aid of ME.
People can donate to us at
https://www.idonate.ie/fundraiser/LeeColliganDonation link for Action for ME
https://joshcolligan.muchloved.com/#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing #EndMECFS @severeme -
“In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME” by David Tuller DrPH
About the desperate situation of #severeME patients not getting help from hospitals with necessary feeding tube fitting.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
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Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
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 #severecfs1/
