@datum@zeroes.ca avatar datum , to random

Hey Australians, if you know anyone in Victoria with Long COVID or ME/CFS, please consider letting them know about this study that is just starting, and is accepting participants: https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

via https://disabled.social/@tomkindlon/116012608109254772

@halcionandon@aus.social avatar halcionandon , to MECFS group

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

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 – Time is Running Out!

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

Anna, an Australian woman battling severe () 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 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 infections in 15 months due to unmasked family members. She now has as well. Compounded by , , , , and more - her health is deteriorating rapidly.

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

's , , and 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 . 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 access.

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

  • Communication Aid (, preferably ): 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 , , or offer direct now!

If you can provide , , 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/


mutualaid@ovo.st icon mutualaid 组


mecfs@a.gup.pe icon MECFS group

@illmarks@www.illmarks.com avatar illmarks , to random

the figure on the manila anatomical bookmark is against a dark ink background. their body is colored in dark green-blue, with vibrant trans pride flag colors across their body diagonally, the white at their lower abdomen. Their face is drawn in extreme concern. A speech bubble shows them asking, "is there a less invasive option?" a drawing of a disembodied white coat,with jagged edges and allmost glitch-like shaking lines is before them. The white coat also has a speech bubble, and replies, "this is the less invasive option."Symptom: Assigned Female At Birth

https://www.illmarks.com/symptom-assigned-female-at-birth/

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@tomkindlon@disabled.social avatar tomkindlon , to random

Unions representing doctors and nurses in the UK are asking the government to recognise the long term impacts of COVID-19 on health and care workers.

https://www.bma.org.uk/bma-media-centre/unconscionable-that-the-government-has-not-recognised-long-covid-as-an-occupational-disease-warns-bma-and-rcn

Screenshot from latest Science for ME weekly update

@longcovid


ALT
@tomkindlon@disabled.social avatar tomkindlon , to random

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

@mecfs
@longcovid

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halcionandon , to MECFS group

Well, not the happiest intro but I’ll cut/paste this here while I still remember then add a proper intro spoons allowing..⬇️

Please and share to other platforms spoons allowing.

Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

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

More info on how to help:: https://buymeacoffee.com/halcionandon/
Beem: Halcionandon

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

Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.

Thanks for reading

#

mecfs@a.gup.pe icon MECFS group @chronicillness @neisvoid
disability@a.gup.pe icon Disability group disabilityjustice@a.gup.pe icon DisabilityJustice group socialwork@a.gup.pe icon socialwork group @mutualaid
@chronicillness

@ahimsa_pdx@disabled.social avatar ahimsa_pdx , to Disability group

🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day

This video from Laurie Jones, executive director of , invites you to join our protest in Washington, DC, or online

Please join us - we need as many folks as possible!

More details here:

https://www.meactions.org/millionsmissing2025

Thank you! ❤️

(see replies for full text of the video)

mecfs@a.gup.pe icon MECFS group
@longcovid
disability@a.gup.pe icon Disability group

Laurie Jones (white woman with long dark hair pulled back) is wearing a red SOS t-shirt and a life jacket as she speaks directly to the camera.

@tomkindlon@disabled.social avatar tomkindlon , to MECFS group

"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/

Image is from April 2025 AMMES Newsletter

mecfs@a.gup.pe icon MECFS group
@longcovid
@chronicillness
spoonies@a.gup.pe icon spoonies group
disability@a.gup.pe icon Disability group
disabilityjustice@a.gup.pe icon DisabilityJustice group









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@halcionandon@aus.social avatar halcionandon , to MECFS group

PLEASE HELP ME ESCAPE!

Please and share to other platforms.🙏I don’t have energy left.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

Last year:
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 . Doctor’s words.

If not mentioned in the article, my father is a diagnosed narcissist with psychopathic & antisocial tendencies by a . He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other members who lured me back through the promise of help.
He truly isn’t but I have nowhere to go.

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.
Please ask people in real life if they have somewhere for me to go. Could they take me in (can pay small rent)?
Is anybody an ? I desperately need help.
I would be incredibly grateful beyond words.🙏

Please read articles for full information.

Thank you for reading.


@chronicillness @longcovid @neisvoid
disabilityjustice@a.gup.pe icon DisabilityJustice group
disability@a.gup.pe icon Disability group socialwork@a.gup.pe icon socialwork group
@dysautonomia @mutualaid
mecfs@a.gup.pe icon MECFS group
@chronicpain
@mcas
australia@a.gup.pe icon australia group
@melbourne

(FYI the help services you may be searching for don’t help in my poor safe Labor catchment. All the services are divided into catchments & mine doesn’t count.)

halcionandon OP ,
@halcionandon@aus.social avatar
@tomkindlon@disabled.social avatar tomkindlon , to AusCOVID19 group

"Meet the Americans who still take COVID-19 precautions seriously"

https://www.news10.com/news/national/ap-vulnerable-americans-live-in-the-shadow-of-covid-19-as-most-move-on/

Image is from latest Science for ME weekly update

@longcovid

@covid19
@novid @novid
auscovid19@a.gup.pe icon AusCOVID19 group
@chronicillness
spoonies@a.gup.pe icon spoonies group
disability@a.gup.pe icon Disability group


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halcionandon , to socialwork group

Well, not the happiest intro but I’l cut/paste this here while I still remember then add a proper intro spoons allowing..⬇️

Please and share to other platforms spoons allowing.

Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

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

More info on how to help:: https://buymeacoffee.com/halcionandon/if-you-can-help-please-help

I’ve tried every level of government and they simply won’t help. Ask people if they have a spare room or somewhere to go.

Is anybody a ? ? Need help.

Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.

Thanks for reading

#

mecfs@a.gup.pe icon MECFS group @chronicillness @neisvoid
disability@a.gup.pe icon Disability group disabilityjustice@a.gup.pe icon DisabilityJustice group socialwork@a.gup.pe icon socialwork group @dyssupport
@mutualaid

(If I’ve broken any rules in posting this, please let me know.)

@halcionandon@aus.social avatar halcionandon , to socialwork group

Please

Finally got dr permission for IV magnesium. I don’t absorb it any other way so I am extremely deficient in it and ill. Can provide materials.

Problem is that I can’t find anyone to come out here in suburbia for less than $600 (check cost of wellness clinics in Melbourne. Expensive or don’t do at all. )

If you are a or have any experience running a drip, please reply/DM. I don’t care if you learned it DIY as long as you know what you’re doing.

This treatment changes my life from bedridden to 60% of normal in a few months! That’s mildly ill in comparison.
It helps every symptom I have.
Hospitals only give it for preeclampsia. Hospital in the Home is the same. Private nurse services same.
It’s so basically going through proper channels doesn’t help.

It’s not illegal to have someone qualified come out and do it as long as doc has signed off on it which is why wellness clinics can do it. But medical system won’t. I know it doesn’t make sense but it’s Australia 2024. If you don’t have formal qualifications we can figure it out.

I’ve even asked the government for help. Nothing.

Was informed even private insurance wouldn’t help with this (I don’t have it ofc but this is an example of how hard and stupid this is.)

P-l-e-a-s-e post to other platforms. I have no team to help promote me I barely have any energy for basics . I have no energy to advertise. If you can help an team also let me know.

Please give me some quality of life.

I’m in .
If you’re willing to drive a distance will compensate for petrol and pay what you think is fair for your time.

TLDR: Need nurse or any qualified healthcare worker to come to my place to give magnesium IV.
Even consider unqualified if you know what you’re doing.

@longcovid mecfs@a.gup.pe icon MECFS group @dysclinic
@chronicillness
@chronicpain
@migraine
disabilityjustice@a.gup.pe icon DisabilityJustice group
disability@a.gup.pe icon Disability group
@DisabilityJustice
disability@beehaw.org icon Disability and Accessibility
socialwork@a.gup.pe icon socialwork group
@socialworkers
@communitycare @mutualaid

Help me get out of bed, gain health, get far away from my abusers.

This is me:

ALT