#severeme — Public Fediverse posts

The official English version of this sympathetic paper has now been published

Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

https://link.springer.com/article/10.1007/s10354-026-01182-3

I have seen some praise for it.

#SevereME #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

The official English version of this sympathetic paper has now been published

Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

https://link.springer.com/article/10.1007/s10354-026-01182-3

I have seen some praise for it.

#SevereME #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

"Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers"

https://thesicktimes.org/2026/07/20/abandoned-by-our-governments-people-with-severe-me-and-long-covid-are-supported-by-severely-ill-peers/

"Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care"

Note: The article mentions the Medical assistance in dying (MAiD) program which is available in Canada.

@mecfs

#MEcfs #SevereME #LongCovid #MyalgicEncephalomyelitis #Disability #HealthCare #Canada

"Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers"

https://thesicktimes.org/2026/07/20/abandoned-by-our-governments-people-with-severe-me-and-long-covid-are-supported-by-severely-ill-peers/

"Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care"

Note: The article mentions the Medical assistance in dying (MAiD) program which is available in Canada.

@mecfs

#MEcfs #SevereME #LongCovid #MyalgicEncephalomyelitis #Disability #HealthCare #Canada

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

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

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

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

RE: https://aus.social/@halcionandon/116959775697960381

Looking for a safe home for Anna.

More information:

https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

https://chuffed.org/project/161937-help-anna-escape

Please share and/or help.🩵

#Australia
#Melbourne
#disability
#mutualaid
#mecfs
#SevereME
#pwME
#domesticviolence

RE: https://aus.social/@halcionandon/116959775697960381

Looking for a safe home for Anna.

More information:

https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

https://chuffed.org/project/161937-help-anna-escape

Please share and/or help.🩵

#Australia
#Melbourne
#disability
#mutualaid
#mecfs
#SevereME
#pwME
#domesticviolence

An interview with Bita Nezamdoust PhD

https://chroniclivingtherapy.com/nezamdoust-marginalisation-neglect-severe-me/

Screenshot from AMMES July 2026 Newsletter

#SevereME #MEcfs #PwME #ME #MyalgicE
@mecfs

An interview with Bita Nezamdoust PhD

https://chroniclivingtherapy.com/nezamdoust-marginalisation-neglect-severe-me/

Screenshot from AMMES July 2026 Newsletter

#SevereME #MEcfs #PwME #ME #MyalgicE
@mecfs

RE: https://troet.cafe/@Lalelilolu/116874017709438257

@IrishMECFSAssociation

Do you have followers from Germany, Austria or Switzerland (who know s.o.) with severe ME? The link below might be interesting.

What it's about:

"The Severe & Very Severe ME Research Registry is an independent, private initiative aimed at making people with severe and very severe ME in German-speaking countries (Germany, Austria and Switzerland) more accessible to scientific research."

#SevereME
#VerySevereME
#mecfs

RE: https://troet.cafe/@Lalelilolu/116874017709438257

@IrishMECFSAssociation

Do you have followers from Germany, Austria or Switzerland (who know s.o.) with severe ME? The link below might be interesting.

What it's about:

"The Severe & Very Severe ME Research Registry is an independent, private initiative aimed at making people with severe and very severe ME in German-speaking countries (Germany, Austria and Switzerland) more accessible to scientific research."

#SevereME
#VerySevereME
#mecfs

@NichtGenesen
@vrw

#mecfs
#SevereME

"Das Severe & Very Severe ME Research Registry ist eine unabhängige, private Initiative mit dem Ziel, Menschen mit schwerer und schwerster ME im deutschsprachigen Raum (Deutschland, Österreich und Schweiz) für die wissenschaftliche Forschung besser erreichbar zu machen."

https://docs.google.com/forms/d/e/1FAIpQLSfTuyaBgIv3dMPhTf9aOb0mGr1Fv-fJOY1n8nnTWQxyNxgHhw/viewform?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQPNTY3MDY3MzQzMzUyNDI3AAGnxffMbbHldyu3L5tfdZ-3oidLXSxiAPYQDJKBaJ25oc1NyjfKUDSRsEjukUY_aem_2g5uxd5xNrZsvMC_XOuq3g

@NichtGenesen
@vrw

#mecfs
#SevereME

"Das Severe & Very Severe ME Research Registry ist eine unabhängige, private Initiative mit dem Ziel, Menschen mit schwerer und schwerster ME im deutschsprachigen Raum (Deutschland, Österreich und Schweiz) für die wissenschaftliche Forschung besser erreichbar zu machen."

https://docs.google.com/forms/d/e/1FAIpQLSfTuyaBgIv3dMPhTf9aOb0mGr1Fv-fJOY1n8nnTWQxyNxgHhw/viewform?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQPNTY3MDY3MzQzMzUyNDI3AAGnxffMbbHldyu3L5tfdZ-3oidLXSxiAPYQDJKBaJ25oc1NyjfKUDSRsEjukUY_aem_2g5uxd5xNrZsvMC_XOuq3g

ME Action: Severe ME Artists Project 2026

https://mailchi.mp/meaction/severe-me-artists-project-3575193?e=df87733c4b

Screenshot from AMMES July 2026 Newsletter

#SevereME #MEcfs #PwME @mecfs

ME Action: Severe ME Artists Project 2026

https://mailchi.mp/meaction/severe-me-artists-project-3575193?e=df87733c4b

Screenshot from AMMES July 2026 Newsletter

#SevereME #MEcfs #PwME @mecfs

Got a new Switchbot curtain opener (and hub, thermometer and CO2 meter) which @izzy installed for me this morning. I'd been considering it for years, and bought it on sale.

Much quieter than my old one from AliExpress (which I got to see if one would work for me at all), and as it's on Home Assistant I can control it from any device (my old one has a remote, which kept ending up out of my reach). Izzy's claiming the old one.

I'm excited to be able to tell it close automatically after sunrise so I don't get blinded by the sun for the 30 minutes it shines directly in my room, but I can have it open at night to let the cold breeze in 😊

I'm also really grateful to be well enough to have one of my curtains open some of the time now. For years I was too ill.

#ChronicIllness #SevereME

Got a new Switchbot curtain opener (and hub, thermometer and CO2 meter) which @izzy installed for me this morning. I'd been considering it for years, and bought it on sale.

Much quieter than my old one from AliExpress (which I got to see if one would work for me at all), and as it's on Home Assistant I can control it from any device (my old one has a remote, which kept ending up out of my reach). Izzy's claiming the old one.

I'm excited to be able to tell it close automatically after sunrise so I don't get blinded by the sun for the 30 minutes it shines directly in my room, but I can have it open at night to let the cold breeze in 😊

I'm also really grateful to be well enough to have one of my curtains open some of the time now. For years I was too ill.

#ChronicIllness #SevereME

Suggestions welcomed for this enquiry we have just received:

“I am wondering if you could recommend any counsellor or therapist for someone dealing with severe ME please in Ireland ?”

#SevereME #PwME #mecfs @mecfs

Suggestions welcomed for this enquiry we have just received:

“I am wondering if you could recommend any counsellor or therapist for someone dealing with severe ME please in Ireland ?”

#SevereME #PwME #mecfs @mecfs

Thursday's Question for Short Debate by Baroness Scott of Needham Market asked the government "what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis."

Read ME Research UK's synopsis - https://tinyurl.com/ntpnd8ns

#severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Thursday's Question for Short Debate by Baroness Scott of Needham Market asked the government "what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis."

Read ME Research UK's synopsis - https://tinyurl.com/ntpnd8ns

#severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

A Quiet Storm is an online art gallery showcasing the artwork of people who have lived with severe ME/CFS

https://meglobalchronicle.wordpress.com/2026/06/04/a-quiet-storm/

#SevereME #SevereMECFS #MEcfs #PwME #ME #MyalgicE
@mecfs

A Quiet Storm is an online art gallery showcasing the artwork of people who have lived with severe ME/CFS

https://meglobalchronicle.wordpress.com/2026/06/04/a-quiet-storm/

#SevereME #SevereMECFS #MEcfs #PwME #ME #MyalgicE
@mecfs

From #MEAction :

"Our Severe ME Artists Project 2026 is coming in recognition of Severe ME day! Full details:

https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

Please note: Many people with Severe ME can no longer practice art. Others have been able to find creative ways to continue. We hold space for those grieving."

@mecfs

#MEcfs #SevereME #PwME #Artist #Art

From #MEAction :

"Our Severe ME Artists Project 2026 is coming in recognition of Severe ME day! Full details:

https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries

Please note: Many people with Severe ME can no longer practice art. Others have been able to find creative ways to continue. We hold space for those grieving."

@mecfs

#MEcfs #SevereME #PwME #Artist #Art

Safer Hospital Care for Severe ME
#SevereME #MyalgicEncephalomyelitis #PwME @mecfs

Safer Hospital Care for Severe ME
#SevereME #MyalgicEncephalomyelitis #PwME @mecfs

#severeME
#disability

If you don’t have cash, please consider giving your time:

Nevra is pleading for able-bodied or only mildly affected #pwME as volunteers to assist with fundraising.

Her current crew are all severely affected by ME/CFS and they would appreciate back-up especially people prepared to help with social media updates or admin.

https://linktr.ee/SaveLizNevra

https://www.gofundme.com/f/save-nevra

#severeME
#disability

If you don’t have cash, please consider giving your time:

Nevra is pleading for able-bodied or only mildly affected #pwME as volunteers to assist with fundraising.

Her current crew are all severely affected by ME/CFS and they would appreciate back-up especially people prepared to help with social media updates or admin.

https://linktr.ee/SaveLizNevra

https://www.gofundme.com/f/save-nevra

2/

Great to see this being highlighted. I imagine it is an issue for some people with ME/CFS or Long Covid in most if not all countries

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PASC #SevereME @mecfs @longcovid #longcovid

2/

Great to see this being highlighted. I imagine it is an issue for some people with ME/CFS or Long Covid in most if not all countries

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PASC #SevereME @mecfs @longcovid #longcovid

ME Research UK:

"There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. https://tinyurl.com/efww9ntj

#mecfs #pwme #severeme #verysevereme @mecfs

ME Research UK:

"There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. https://tinyurl.com/efww9ntj

#mecfs #pwme #severeme #verysevereme @mecfs

It would be wonderful if similar facilities were available in other countries

Specialised care for severely affected ME/CFS patients

https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101

Screenshot from AMMES June 2026 newsletter

#SevereME #MEcfs #PwME #VerySevereME #ME #MyalgicE
@mecfs

It would be wonderful if similar facilities were available in other countries

Specialised care for severely affected ME/CFS patients

https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101

Screenshot from AMMES June 2026 newsletter

#SevereME #MEcfs #PwME #VerySevereME #ME #MyalgicE
@mecfs

An Essay on Living with Severe ME

https://virology.ws/2026/01/27/trial-by-error-an-essay-on-living-with-severe-me/

Screenshot from AMMES June 2026 newsletter

#SevereME #MEcfs #PwME #ME #MyalgicE
@mecfs

An Essay on Living with Severe ME

https://virology.ws/2026/01/27/trial-by-error-an-essay-on-living-with-severe-me/

Screenshot from AMMES June 2026 newsletter

#SevereME #MEcfs #PwME #ME #MyalgicE
@mecfs

It’s really hard to keep interacting so I have an online presence & people don’t forget I’m still (sorta) alive.
Most people have disappeared anyway. Where did they go?
Gotta crowdfund & I don’t have the energy on a team of 1. Why do some people have help come so easily while I’m screaming out for help for years?
Got a laundry list of #ChronicIllness diagnoses. #SevereME on its own is enough.
Yeah. I’m exhausted & tired. I just want to escape. I don’t know how else to explain things.

🥺

It’s really hard to keep interacting so I have an online presence & people don’t forget I’m still (sorta) alive.
Most people have disappeared anyway. Where did they go?
Gotta crowdfund & I don’t have the energy on a team of 1. Why do some people have help come so easily while I’m screaming out for help for years?
Got a laundry list of #ChronicIllness diagnoses. #SevereME on its own is enough.
Yeah. I’m exhausted & tired. I just want to escape. I don’t know how else to explain things.

🥺

It’s really hard to keep interacting so I have an online presence & people don’t forget I’m still (sorta) alive.
Gotta crowdfund & I don’t have the energy on a team of 1.
Got a laundry list of #ChronicIllness diagnoses. #SevereME on its own is enough.
Yeah. I’m exhausted. I just want to escape. 🥺

It’s really hard to keep interacting so I have an online presence & people don’t forget I’m still (sorta) alive.
Gotta crowdfund & I don’t have the energy on a team of 1.
Got a laundry list of #ChronicIllness diagnoses. #SevereME on its own is enough.
Yeah. I’m exhausted. I just want to escape. 🥺

#mecfs
#disability

Nevra is having to choose between homelessness, mould exposure, or gas exposure just to survive.

With Very #SevereME even everyday tasks and exposures can cause devastating crashes and long-term deterioration. She is repeatedly being forced to push far beyond what she can safely tolerate.

She urgently needs:
• safe accommodation + deposit costs
• a second room to isolate contaminated belongings
• food
• care support

Please support her, if you can.🌈

http://GoFundMe.com/f/save-nevra

#mecfs
#disability

Nevra is having to choose between homelessness, mould exposure, or gas exposure just to survive.

With Very #SevereME even everyday tasks and exposures can cause devastating crashes and long-term deterioration. She is repeatedly being forced to push far beyond what she can safely tolerate.

She urgently needs:
• safe accommodation + deposit costs
• a second room to isolate contaminated belongings
• food
• care support

Please support her, if you can.🌈

http://GoFundMe.com/f/save-nevra

International #MEAwarenessMonth has just ended and, with the first day of June, I, a #pwME #SevereME, washed myself at my basin for the first time this year. Lovely hot water! #MECFS #MyalgicEncephalomyelitis

International #MEAwarenessMonth has just ended and, with the first day of June, I, a #pwME #SevereME, washed myself at my basin for the first time this year. Lovely hot water! #MECFS #MyalgicEncephalomyelitis

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics http://www.dialogues-mecfs.co.uk/films/severeme/

@mecfs #mecfs

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics http://www.dialogues-mecfs.co.uk/films/severeme/

@mecfs #mecfs

NZ Media Awards: 2026 Winners & Finalists

Zoe Madden-Smith (Re: News / TVNZ) wins Video Journalist of the Year for "ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies."

https://npa.co.nz/nz-media-awards/2026-winners/

https://youtu.be/DsOAq6cs564

#MEcfs #SevereME #CFS @mecfs

NZ Media Awards: 2026 Winners & Finalists

Zoe Madden-Smith (Re: News / TVNZ) wins Video Journalist of the Year for "ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies."

https://npa.co.nz/nz-media-awards/2026-winners/

https://youtu.be/DsOAq6cs564

#MEcfs #SevereME #CFS @mecfs

18/

May is #MyalgicEncephalomyelitis (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI

Day 18
#SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
@mecfs

18/

May is #MyalgicEncephalomyelitis (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with
severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI

Day 18
#SevereME #SevereCFS #SevereMECFS #MEcfs #PwME
@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

@mecfs @longcovid

#MEcfs #LongCovid #SevereME #MEAwarenessDay #WorldMEDay

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

@mecfs @longcovid

#MEcfs #LongCovid #SevereME #MEAwarenessDay #WorldMEDay

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]

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]