Emilie Jayne

Making. Creating. Being. Reflecting. Inclusion. Access. PhD candidate: nature of relationship experienced by people & support staff in disability accommodation.

[a tired human @saffronandsky]

Please donate generously! 🩵

[Fall Through22 @dallingr]

It’s CFS/ME awareness day ✨
We’ve raised 20% of our goal to take Jarrod (Brav) out of imminent homelessness; he’s done more for the CFS/ME community than anyone I know.
To be safe and housed is something we all deserve.

Please share to your circles/spaces and donate if you can

[a tired human @saffronandsky]

The thing some ppl don't realize is there are degrees of disability. Before longcovid I had another chronic illness. I couldn't work or go for a run & had to rest often. But I could care for myself, my kids, cook a meal, socialize, go for a walk. I had a good quality of life 1/

[a tired human @saffronandsky]

Hey folks, I'm reaching out to see if we might find someone to help a young woman I've been in contact with whose life if in danger due to a dire medical situation and not receiving proper care.

She has very severe MCAS, MECFS, Lyme disease, CCI, IIH and possibly other issues. For the last year she has become dangerously malnourished due to inability to swallow and keep down food (ineffective esophageal motility) and severe reactions to all foods.

She recently got a peg-j tube, but her severe MCAS reactions (difficulty breathing, difficulty keeping formula down, severe itching and burning, rashes, severe GI pain, etc) to formula mean that she still cannot get sufficient calories.

However, instead of exploring alternatives such as tpn or hypoallergenic formulas, the hospital is treating this issue as psychiatric and says she doesn't have MCAS and sending her home. She's also losing vision, having intermittent full body numbness + heaviness/weakness, brain fog, seizures, dizziness, painful eye bulging and more.

After suffering severely for so long and having multiple hospitals refuse to take her issue seriously, she's considering going home to die. Unfortunately, she does not have supportive family or friends to advocate on her behalf.

I am very severe myself and have limited ability help but I've been wracking my brains trying to figure out who might be able to help because I can't just stand by and watch her die.

She is in Tennessee and if you have any ideas if you could contact her @sadfoxqueen

Thank you so much! Also, please tag anyone who can spread this message or may have connections!

[a tired human @saffronandsky]

https://t.co/hScVdcCaJF

One of the things I love about disabled community community is our interdependence, how we give whatever we have to help over another survive.

[a tired human @saffronandsky]

A dear friend of mine also happens to be one of the most brilliant and generous people I know. He's helped hundreds of others w/ chronic illness even while he himself is disabled by ME and trapped in an abusive living situation. It's MECFS awareness day and he needs our help to get out!
/1

[MEsearch @imMEurMEweallME]

It's #MECFSAwarenessDay. It's far too common that some of our own patient researchers are put into life threatening situations.

I was in one years ago, and community support was literally a lifeline.

We're at 20% of the goal needed to help Jarrod get out of a similar situation!

[MEsearch @imMEurMEweallME]

@chydorina @joshual_tm Brav is brilliant. I hope he gets all the help he needs <33

[Fall Through22 @dallingr]

@chydorina @joshual_tm Please get around this guys!!
Thank you to everyone who’s donated so far!!

[MEsearch @imMEurMEweallME]

Anyone who has benefitted from the Born Free protocol. Please consider helping out here.

You've almost certainly had contact with Jarrod (aka Brav).

He's the guy who has answers to seemingly anything and has a brilliant mind that deserves to see many more decades of life!!!

[Fall Through22 @dallingr]

Hi all. If you’re able, please donate & share this GoFundMe for Jesse, Brav, who has severe CFS/ME and is about to be homeless. He’s made a profound contribution to the CFS/ME community with his work. I simply wouldn’t be here without his help. https://t.co/3UmNpyTlRD

[🕸️Dr.T, PhD @chydorina]

Jarrod (known as "Brav" to those in the know) has answered more questions about the Born Free protocol than any other human being on the planet (other than @joshual_tm of course).

Seriously, if he made a cent for each letter....well...you get the gist.

There are people working behind the scenes in our community that go so far above and beyond while also being incredibly sick that it is well - pretty heroic.

He needs help to survive right now.
https://t.co/flTI4xQDOG
@dallingr

[Emilie Jayne @eeejaytee]

To find our more about ME/CFS, and how it can be, maybe have a look at the OMF Clinical Care Guide? It's been practically very useful for me.. covers quite a lot... https://t.co/cmBdbEbEi0

[Emilie Jayne @eeejaytee]

It's May, and it's ME/CFS Awareness Month!
When I was a little kid, in year 3 at school, I ended up with ME/CFS following an EBV / glandular fever infection... some 4 decades ago.
It has ebbed and flowed, mostly been moderate.

[Sam Connor @criprights]

@punterspolitix you might be interested in the fraud stuff - and the fact that the 'NDIS Fraud' group on Facebook to collect stories about dodgy providers appears to have been started by one Drew Pavlou, he of the recent interview with Karl Stefanovic.

I wonder who is bankrolling him? Because - check this shit out. @RonniSalt, isn't it odd that there is so much coverage for a whole - 26 convictions all up?

The figures below are for 2024-2025.

[Sam Connor @criprights]

Who hates misinformation?

AUTISTICS hate misinformation!

So do all disabled people whose lives are being tinkered with.

But we've made some tools for you to counter that - give your local journalist, regional radio station or newspaper a yell and let them know the REAL facts about;

FRAUD: What the actual data and statistics say - and how much fraud there IS in the NDIS

SUSTAINABILITY: Whether Australia can really afford an NDIS, which was always designed to invest in Australia - or does government just have different priorities?

REGISTRATION: Why disabled people need real choice and control in choosing our workers and services

INSTITUTIONS: Why shoving disabled people into group homes, institutions and other congregate settings doesn't actually save money, and is bad for all Australians

You can download them directly here:
https://t.co/EBzrXfxlKr

I'm going to give my significantly huge journalist list a call, one by one - you? And Newcastle Herald, I'm giving your editor a call!

Let's smash this!

https://t.co/Mg7S6SsHkJ

@guardian @theage @smh @Channel9 @Channel7 @RadioNational @abcnews @SBS @westaustralian @ConversationEDU @crikey_news @d_hardaker

[melissa @ArtistAffame]

Every time the RBA raises interest rates the focus is only on those with a mortgage. Which I can understand but the people that are going to lose their jobs should be mentioned too.

[Kelly @broadwaybabyto]

Disabled people shouldn’t have to beg for healthcare, housing and food.

They shouldn’t have to “prove they matter” to access social supports.

They shouldn’t have to explain their disability to every single person who asks.

Disability is a minority group you can join any time.

[Wonder of Science @wonderofscience]

Fascinating video showing glutamate lighting up as it’s released in synapses, visualizing the neurotransmitters of the brain, made possible with the fluorescent indicator protein iGluSnFR3.

📽: Allen Institute for Neural Dynamics

[Sam Connor @criprights]

5/ So let’s get it on. I’ve lodged my AHRC complaint, but I’m interested in a class action, with others. There are many of us and we are sick of being treated like third class citizens.

Time to fight back.