#severeme — Public Fediverse posts

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

4/

Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

@Lalelilolu

#mecfs #spoonie #severeme #millionsmissing #disabilityrepresentation

@Lalelilolu

#mecfs #spoonie #severeme #millionsmissing #disabilityrepresentation

@Lalelilolu

#mecfs #spoonie #severeme #millionsmissing #disabilityrepresentation

@Lalelilolu

#mecfs #spoonie #severeme #millionsmissing #disabilityrepresentation

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.

11/

#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day

&

May is #MECFSawarenessmonth

Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others

https://www.youtube.com/watch?v=9_HwOUiImvw

#Day11

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

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

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.🙏I don’t have energy left (see below).

Seems desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

👉2024
https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

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

I’ve tried every level of government, every service and they simply won’t help.

Ways to help:
💸Fund: https://chuffed.org/project/161937-help-anna-escape
☕️BMaC: https:/buymeacoffee.com/Halcionandon
🎁Amazon://www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
✨Beem: Halcionandon

- #Housing!
Ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small board $250)? A lot people have ‘big house, not enough money’ problem. I can help!

- #advocacy. I desperately need help. Even basic daily admin.

I would be incredibly grateful for any help beyond words.🙏

Please read articles for full information.

Thank you for reading.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath

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

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

Liebe Nichtbetroffene und Interessierte,

falls ihr euch fragt, wie es ist mit schwerstem ME/CFS zu leben:

Dieser sehr bewegende Beitrag von @SabineHermisson
vermittelt besser als jeder wissenschaftliche Vortrag, welche unfassbare Schwere die Erkrankung
annehmen kann.

https://youtu.be/-XfMAYUqgXw?si=nNIXJJ8cJpyTdriG

#mecfs #severeME #MEKills

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

Liebes Fediverse: Morgen, am 08. August, ist #severeMEday. Wie ihr wisst, bin auch ich seit 08/23 schwer an ME/CFS, häufig auch nur ME genannt, erkrankt. Ich würde mich freuen, wenn besonders auch Nichtbetroffene morgen in den sozialen Netzwerken auf die schwere Erkrankung ME/CFS aufmerksam machen könnten. Vielleicht könnt ihr selbst einen Satz dazu schreiben. Es ist wichtig, dass die Aufmerksamkeit die Betroffenen-Bubble verlässt. Ich danke euch sehr!

#MECFS #ME #severeME #MEkills

A veces se hace duro ver tanta vida fuera, dejando pasar la mía entre estas paredes.
Y a la vez agradecer poder estar al día de cosas que nunca vería o sabría si no fuera por una pantalla.
Hace años el aislamiento debería ser aún más duro.

#EncefalomielitisMialgicaSevera #EncefalomielitisMialgica #MEcfs #EMsfc #SFCem #severeME #encamada #confinamiento #pacientes #cronicos #bedbound #housebound #aislamiento #isolation #soledad #lonely #Lonelines #autoimmunes #Metabólicas #autoimmune

Possible benefits of #PreEmptiveRest. NB the article does not specify which degree of #MyalgicEncephalomyelitis the writer suffers. As a #pwME #SevereME it is beyond me to schedule anything on a regular basis. May be of benefit to those with #MildME or #ModerateME.

This is NOT a recommendation. Food for thought.

Link to CFSSelfHelp.org:

http://www.cfsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest