#severeme — Public Fediverse posts

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/

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

#SevereME #PwME #CFS #MEcfs
@mecfs

4/

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

#SevereME #PwME #CFS #MEcfs
@mecfs

4/

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

#SevereME #PwME #CFS #MEcfs
@mecfs

4/

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

#SevereME #PwME #CFS #MEcfs
@mecfs

4/

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

#SevereME #PwME #CFS #MEcfs
@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.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@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.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@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.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@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.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@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.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@mecfs

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"

https://batemanhornecenter.org/listen_believe_do_no_harm/

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

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"

https://batemanhornecenter.org/listen_believe_do_no_harm/

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

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"

https://batemanhornecenter.org/listen_believe_do_no_harm/

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

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"

https://batemanhornecenter.org/listen_believe_do_no_harm/

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

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"

https://batemanhornecenter.org/listen_believe_do_no_harm/

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

“People have no idea what Severe ME is like” – Nevra, Pakistan

Unfortunately, Nevra's condition keeps getting worse. If you can, please support her GoFundMe campaign.
Thanks!

🩵 https://gofund.me/919653851

Articles about Nevra:

December 2025
https://thesicktimes.org/2025/12/15/medically-neglected-and-structurally-erased-international-network-appeals-for-me-advocate-nevra-elis/

November 2024
https://www.thecanary.co/global/world-analysis/2024/11/07/nevra-mecfs-pakistan/

April 2024
https://worldmealliance.org/2024/04/people-have-no-idea-what-severe-me-is-like-nevra-pakistan/

#GlobalVoiceForME
#Pakistan
#SevereME
#MECFS
#disability
#POTS
#MCAS
#PMDD
#OCD
#Hypermobility
#endometriosis
#TMJdisorder
#CCI
#domesticviolence

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.

Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI

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