#severeme — Public Fediverse posts

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

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

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

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

Letter to social-worker on #communication, 4,800 words. Areas included:

relevant illnesses & disabilities;

energy-limiting chronic illness #ELCI ;

speech issues;

listening & hearing issues;

vision issues;

reading issues;

writing issues;

cognitive issues;

sensation-overload issues;

social contact issues;

#NICE guidance #NG206;

conclusions.

Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…

#pwME #SevereME #MyalgicEncephalomyelitis