#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.
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ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
Screenshot from latest Science for ME weekly update
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ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
Screenshot from latest Science for ME weekly update
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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 -
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“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.” -
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“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.” -
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“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"
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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"
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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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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
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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/
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#CareQualityCommission cc. #TraffordCouncil @@
I have gone from being very poorly cared for by #Trafford to now not at all - the biggest #abuse by those with power. Would the #Courts consider causing #malnourishment & extended periods (months) of #dehydration worse than swearing at a #carer? #SocialCareCrisis #pwME #SevereME
Link to my facebook posting with further links to the details for those interested
https://m.facebook.com/story.php?story_fbid=5951498061563813&id=100001110350908