#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 -
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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The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.
#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #Virology blog:
https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf
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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 -
Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.
I have actually managed to write a blog-post this year!
#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
Link to Blogger:
https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html
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Letter to social-worker on #communication, 4,800 words. Areas included:
relevant illnesses & disabilities;
energy-limiting chronic illness #ELCI ;
speech issues;
listening & hearing issues;
vision issues;
reading issues;
writing issues;
cognitive issues;
sensation-overload issues;
social contact issues;
conclusions.
Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…