#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

“Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction” By David Tuller

https://virology.ws/2026/09/02/trial-by-error-patient-advocate-anil-van-der-zee-receives-dutch-royal-distinction/

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME @mecfs

“Accelerating Severe ME/CFS Research”
(August 6, 2026) by the Solve ME/CFS Initiative

https://solvecfs.org/accelerating-severe-me-cfs-research/

#MEcfs #SevereME @mecfs

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

https://wimel2.wordpress.com/

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #CFS @mecfs

"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

#MyalgicEncephalomyelitis #MEcfs #PwME #CFS @mecfs

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

I’m really unwell. Please 🔄SHARE my pinned crowdfund &💸 GIVE if you can. Share on all social media platforms you’re on. I can’t get to many.l 😞

It’s not looking great. Doctor confirmed I’m slowly dying in this environment. I don’t even get regular food.
I need to escape ASAP. PLEASE HELP 🙏

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

From Crowdfund:

🚨EMERGENCY🚨

Anna, an #Australian woman battling severe #MyalgicEncephalomyelitis (#ME) for over 20 years, is trapped in a toxic home with #abusive family members. She has multiple chronic illnesses too

#Bedbound & forced to stay in a dark room, she is very vulnerable and that is taken advantage of. She is not allowed to access #disabilityaids or supportworkers & needs approval for all mailed items including food, which may be binned or sold regardless. She faces deliberate exposure to sensory overload, days without food, constant yelling, gaslighting, called every insult, stolen belongings - the list is endless.

She has been infected with #COVID 3 times in 15 months due to unmasked family members, who have ignored the pleas of her doctor to be Covid conscious. She now has #LongCovid as well.

This is compounded by #endometriosis, #hypothyroidism, #POTS, #chronicpain, & more. She was forced to decline surgery to remove endometriosis after her family denied her after care & would not allow support workers to assist. One of many examples where medical care was denied by #CoersiveControl

As a result of all this her health is deteriorating rapidly. She is living in "survival mode” but can’t for much longer.

There are no steady rules, just excuses for her #abuse.

** Her doctor fears staying in this environment will kill her.**

Australia's #healthcare, #disability, & #domesticviolence systems have failed her catastrophically, This systemic #neglect has created a #lifethreatening crisis – & for Anna, it's already too late to wait.

**Anna's Critical Needs***

- **Safe #Housing ASAP:** Anna desperately needs a quiet #room in a COVID-conscious (masking) home in #Melbourne. She can pay rent $250 per week,funded meals & limited care hours; long-term help may qualify for Carer's Allowance. You’re not required to be a carer but can choose to.

- **Secure Relocation:** Ambulance transport to reduce infection risks & reduce further stress & worsening of symptoms.

- **Expert Advocacy:** A #disabilityadvocate for complex cases to navigate the system with her. She can’t do this alone.

- **Communication Help (#Australia, preferably #Victoria):** Someone to handle phone tasks – all info provided. She can’t use the #phone due to the severity of her illness.

Read more about Anna's story:

"Australia’s state & services are trapping a woman living with #severeME in #domesticabuse

And they keep passing the buck"

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

Please donate, share, or offer direct help now!

If you can provide housing, advocacy, or calls, contact immediately - Halcionandon at gmail dot com

Thanks. ❣️

#MutualAid #FediAid

I need 1 good person to get me out of here please get me out of here. JUST ONE.😭

Stuck with one diagnosed #narcissist/ #psychopath but the others are the same. I don’t want to die here. Doctor literally said I’m dying here. There’s nowhere to go. I’ve asked all the helplines, churches, community groups, everybody!!! They send you round in circles.

I severely ill. I can’t help myself. I can improve In a better environment. They deliberately keep me sick so I can’t get away.

Help please.!!!!!🙏

#MECFS
#SevereME
#LongCovid
#ChronicPain
#Hypothyroidism
#Endometriosis
#Abuse
#NarcissisticAbuse
#Neglect
#FDV
#DV
#MutualAid #MutualAidRequest
#HelpFolksLive2026

I need 1 good person to get me out of here please get me out of here. JUST ONE.😭

Stuck with one diagnosed #narcissist/ #psychopath but others are the same. I don’t want to die here.

Help please.!!!!!🙏

#MECFS
#SevereME
#LongCovid
#ChronicPain
#Hypothyroidism
#Endometriosis
#Abuse
#NarcissisticAbuse
#Neglect
#FDV
#DV
#MutualAid #MutualAidRequest

Help me escape abuse & finally get out of here this #NewYear 🎉🥳

Please help by hitting 🔄 BOOST , 📝QUOTE & 💸 GIVE if you can. Share on all social media platforms.

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

### Urgent Appeal: Help Anna #Escape #Abuse – Time is Running Out!

🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from #Abuse and #Neglect!

Anna, an Australian woman battling severe #MyalgicEncephalomyelitis (#ME) for over 20 years, is trapped in a toxic home with abusive family members. Bedbound and forced to stay in a dark room, she is vulnerable and that vulnerability is taken advantage of. She is not allowed access to #disability aids or workers and needs approval for all mailed items including food, which may be binned or sold regardless. There are no steady rules, just excuses for her abuse. She faces deliberate exposure to sensory overload, days without food, constant yelling, stolen belongings, and three #COVID infections in 15 months due to unmasked family members. She now has #LongCovid as well. Compounded by #endometriosis, #hypothyroidism, #POTS, #chronicpain, and more - her health is deteriorating rapidly.

** Her doctor fears that staying in this environment will kill her.**

#Australia's #healthcare, #disability, and #domesticviolence systems have failed her catastrophically,. This systemic neglect has created a life-threatening crisis – and for Anna, it's already too late to wait.

**Anna's Critical Needs – Your Support Can Save Her:**

- **Safe Housing ASAP:** Anna desperately needs a quiet room in a COVID-conscious (masking) home in #Melbourne. She can pay rent $250 per week, with funded meals and limited care hours; long-term help may qualify for Carer's Allowance. She has indicated she may need incidental help.

- **Secure Relocation:** Specialized transport to reduce infection risks and suit her ME. Funds needed for moving costs and aids until #NDIS access.

- **Expert Advocacy:** A #DisabilityAdvocate for complex cases to navigate the system with her. Even a friend just willing to help. She can’t do this alone.

- **Communication Aid (#Australia, preferably #Victoria):** Someone to handle phone tasks – all documents provided. Brain injury has made phone use impossible.

-**This is a Shameful Failure – But You Can Help** In a resource-rich nation, no one should rot in abuse while services ignore them. Don't let Anna become a statistic.

Please #donate, #share, or offer direct #help now!

If you can provide #housing, #advocacy, or calls, contact immediately at -

Halcionandon at gmail dot com

If Chuffed is not your thing, you can donate at:
BMaC- https://www.buymeacoffee.com/Halcionandon
Beem: Halcionandon

Thanks so much for reading. Please share!

Read more about Anna's story:
https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

#MutualAidRequest #MutualAid #Narcissist #NarcissisticAbuse #Crowdfund #Neglect
@mutualaid
#LongCovid #NewYear #PWLc
#MECFS #PWME #SevereME #ChronicPain
@mecfs

I feel that escape to a better place soon might be possible. BUT if it doesn’t happen I’ll be crushed beyond anything I can imagine.

What’s that quote? Paraphrase: It’s not the despair. I can handle the despair. It’s the hope that kills you.

Except I’m gonna die if I don’t escape so yeah.

No really, my doctor said so. I’ll die if I stay here. I’m already far sicker than I was a year ago because I keep getting exposed to Covid. And that’s the 1% of problems if you’ve been following. My profile is full unhappy and abuse stories if you haven’t been following & want a deleting read. I’ve even had my story published.

#SevereME #LongCovid #ChronicPain #Endometriosis #Neisvoid #ChronicIllness #Hypothyroidism #POTS #Dysautonomia #NarcissisticAbuse #Abuse #Narcissist #Neglect i got everything except what I need.

In case it was missed in the post above, this is my updated article:

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

My doctor predicts I will die if I don’t leave soon.

I need a solid, safe, home I can go to and recover to at least a stable baseline. It’s not full recovery, but it’s better than a slow death.

Help please 🙏

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath #MCAS #MCAD #Endometriosis #ChronicPain #CostOfLivingCrisis #Melbourne #Australia #DomesticAbuse #DV

@chronicillness @longcovid @neisvoid
@disabilityjustice
@disability @socialwork
@dysautonomia @mutualaid
@mecfs
@chronicpain
@mcas
@australia
@melbourne

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

10/
💬Mindful Communication💬 Healthcare professionals - you can improve experiences. Provide clear and compassionate communication. Involve family and caretakers in decision-making processes. If patients can tolerate conversation, speak slowly and quietly. #SevereME #MedTwitter
@severeme @mecfs #mecfs