#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.” -
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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.” -
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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“Accelerating Severe ME/CFS Research”
(August 6, 2026) by the Solve ME/CFS Initiative -
When My Myalgic Encephalomyelitis Was Severe
Lisa Marie, a member of the WIMEL Writers group, shares an excerpt from her essay "When My Myalgic Encephalomyelitis Was Severe."https://www.youtube.com/watch?v=sj8FuSFMchg
Screenshot from latest Science for ME weekly update
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"Severe-Very Severe Myalgic Encephalomyelitis: What GPs need to Know" 60-second Guide
whānau means extended family
https://anzmes.org.nz/world-me-day/severe-me-day/severe-me-day-2026/
#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs
#SevereME -
I have just changed my profile: now 32 years with #severeME (more than half my life) (ill 37.5 years)☹️
Hope research progress is made soon🙏
Links:
Lists of research funds:
https://europeanmecoalition.com/resources-for-researchers/
&
https://me-pedia.org/wiki/Category:Research_initiatives- My story: https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html
Non-paywalled version of my story:
https://archive.is/IXpod -
Wales Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
https://petitions.senedd.wales/petitions/247069
Screenshot from latest Science for ME weekly update
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Science for ME @s4me Fact Sheet 4: Management of severe and very severe ME/CFS
https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf
https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/
Screenshot from latest Science for ME weekly update
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ME Research UK:
An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.
Read more: https://tinyurl.com/yc264wbm
#severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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Other #SevereME people: do you consider whatever you wear as pajamas as “putting on clothes”? Or just your outside clothes you may change in to rarely when leaving?
Surveys don’t specify but it’s the second, I’ve been wayyyy overestimating my capacity
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August 8th is already observed as Severe ME Day, commemorating the first recognised UK death from ME.
Expanding August to #SevereMEMonth would:
- Allow patients and caregivers to pace their involvement, in keeping with medical guidelines on energy management
- Preserve 8 August as the anchor day of remembrance and advocacy
- Enable sustained, coordinated outreach, research advocacy, and community support
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New Fact Sheet from the Science for ME (S4ME) Forum:
"Management of severe and very severe ME/CFS"
https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/
This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies.
1/4
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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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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RE: https://troet.cafe/@Lalelilolu/116561938964452357
Today, August 8th, is international #severeME day.
Support #research
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For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
https://meassociation.org.uk/csme
#VerySevereME #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
https://meassociation.org.uk/csme
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
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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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/1114111https://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