#severeme — Public Fediverse posts

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

https://s4me.info/threads/united-kingdom-news-including-uk-wide-england-ni-and-wales-see-separate-thread-for-news-from-scotland.29404/post-712702

Screenshot from latest Science for ME weekly update

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

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

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

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

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

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

#Petition by #SevereME patient Nevra:

https://www.change.org/p/declare-august-as-severe-me-awareness-month-2e6e4c25-2c9b-4040-838a-26231597ae98?utm_medium=custom_url&utm_source=share_petition&recruited_by_id=7ff81c00-ac90-11f0-8ad2-095ea43764b9

@IrishMECFSAssociation

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.

@mecfs

1/4

#MEcfs #SevereME #PwME #S4ME

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

#SevereME #mecfs #amwriting #schreiben #bookstodon

“The more ill you become, the less care you receive” - Severe ME Inquiry Report

Article
https://www.actionforme.org.uk/the-more-ill-you-become-the-less-care-you-receive-severe-me-inquiry-report/

Report
https://www.actionforme.org.uk/wp-content/uploads/2026/08/Severe-ME-Inquiry-Report-August-2026-Action-for-ME-and-the-25-ME-Group.pdf

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

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"

@mecfs

#MEcfs #PwME #SevereME #ChronicIllness #Disability

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

Online Gallery:

https://www.meaction.net/severe-me-artists-project-2026

3/3

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

Video compilation (about 16 minutes long)

https://www.youtube.com/watch?v=rRfl4tEp6tc

2/3

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

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

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

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."

@mecfs

#SevereME #SevereMEcfs #MEcfs #PwME #SolveME

Severe ME Awareness Day

#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

RE: https://troet.cafe/@Lalelilolu/116561938964452357

Today, August 8th, is international #severeME day.

Support #research

https://mecfs-research.org/en/

#disability

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

Manx Radio (Isle of Man)
Man with severe ME speaks out about 'cruel and difficult' disease

https://www.manxradio.com/news/isle-of-man-news/man-with-severe-me-speaks-out-about-cruel-and-difficult-disease/

8-minute audio plus short text introduction

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

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

Screenshot from latest Science for ME weekly update

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

RE: https://mastodon.social/@NichtGenesen/117031541066177194

#Liegenddemo am 07. oder 08.08.für schwer von #mecfs Betroffene

#SevereME

#Berlin
#Oldenburg
#Köln
#Frankfurtammain
#Regensburg
#Essen
#Hamburg
#Stuttgart
#Göttingen

Forward ME (UK):
Briefing Paper on Clinical assessment of people with very severe ME/CFS

https://forward-me.co.uk/fme-briefing-paper-on-clinical-assessment-of-people-with-very-severe-me-cfs/

https://forward-me.co.uk/wp-content/uploads/2026/07/Clinical-Assessment-of-Very-severe-ME_CFS-briefing-document.pdf

Screenshot from latest Science for ME weekly update

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

One week ago to August 8, #SEVEREMEDAY

I have a Pinterest board with 714 pins on #severeMECFS here https://ie.pinterest.com/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles

You don't need to be on Pinterest

#SevereME #MEcfs #PwME @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

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

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