Woozle
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wiredwoozle.bsky.social
Woozle
@wiredwoozle.bsky.social
240 followers 260 following 280 posts
The more we get sick, the sicker we shall be.
🇨🇦 #pwME
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wiredwoozle.bsky.social
Woozle @wiredwoozle.bsky.social · Nov 8
The sudden X-odus has me worried for chronically ill folks who:
😓 depend on #MutualAid for survival
😧 are stuck in #DV & need help escaping

Can we rally for them here, somehow?
Use this moment to catapult their needs (with permission) beyond the poor/sick community? 1/
#pwME #LongCovid #NEISVoid
Reposted by Woozle
wiredwoozle.bsky.social
This need remains unmet. 😰💔

If you live in/near Melbourne, are #CovidConscious, and have a quiet spare room...
Seriously consider opening your home to Anna. 🏠

Please share this post. 🔃
I believe the right people are out there, ready to help #SaveAnna. 💙
#DV #LongCovid #pwME #HelpSky
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Apr 15
Someone in Australia PLEASE house our friend—even temporarily. She will die by #DV.

Anna has #SevereME but manages toileting. Basically she needs a bed in a quiet room, meals heated up, laundry—she can remunerate.

Details in 🧵. Or, feel free to DM me with questions. Share this post. 🔁 #SaveAnna
halcionandon.bsky.social Anna (needs a SAFE HOME) @halcionandon.bsky.social · Apr 15
Surviving on bars & what can find need out here to safe home cannot barely read can’t order all bad it worsen no help

No cops hospital.

Copsnothing but drama & yell me get own home

Hosp send home waiting no understanding torture conditions referee to services don’t exist go circles not their prob
June 19, 2025 at 4:42 AM
Reposted by Woozle
diatoma.bsky.social
Sharing my #MEAwarenessMonth poem. It's July, but the months, years, decades pass #pwME by, & the question remains.
#GreatestMEdicalScandal #MyalgicEncephalomyelitis
@johngreensbluesky.bsky.social @hankgreen.bsky.social @mehdirhasan.bsky.social @thrasherxy.bsky.social @gregggonsalves.bsky.social
First page of the poem titled 'Third persons' that reads: Third persons (a Myalgic Encephalomyelitis Awareness Month poem) Who are we waiting for? Who must we coax into zooming their attention on the facts of our broken bodies long enough for outrage to boil into full engagement: time, resources, voice. The third persons to tell the story we’ve been howling til our own cords tear, repair, then tear again, or whispering because our muscles cannot hold the volume of injustice. In the first person: our own details and in our third person: our friends’ details and the favorite birdsongs of those who’ve passed away after treading on quicksand, never to know the promise of acknowledgment (not even a cure, just less neglect), which seems sometimes in sight but perhaps a mirage. Sophia Mirza says “I don’t want to be a cautionary tale” Second page of the poem titled 'Third persons' that reads: in the 2011 documentary Voices from the Shadows. Sophia Mirza died of M.E. in 2005. She was 32 and an artist who’d loved camping, recycling, yoga, who suffered (a verb carefully chosen) Severe M.E. and critically deteriorated after being forced into a psychiatric ward in 2003. Her post-mortem revealed dorsal root ganglionitis. Her last words, spoken to her mother, who’d asked about sharing her story to keep others from the same end: “Then it will all have been worth it.” We carry her loss, two decades ago, and dozens of blue roses. We add our endangerment— bodies allergic to life, life yet erupting— and tally the thefts: work, family, the five senses. Our particular griefs, we’re told, can reach foreign hearts, but so many insist on calling lived-experience unreliable, Third page of the poem titled 'Third persons' that reads: as though the bias of inexperience didn’t permeate insidiously when fear and hubris lead. “Malingerers!” they print to keep non-nuanced viewers from knowing this too could be their cage. All suffering behooves us but furthermore: you too could turn into a heartsink patient, ruthlessly compared to buoyant peers. For media favors the feel-okay narration: individuals with promising new acts. If not recovery, then commendable adjustment: not training for triathlons but now a tai chi instructor in Tulum, forcibly retired but picks flowers with their labradoodle. And those of us still in the too-shrunk in-between (most verbs erased) with joys (sparrow at my window, cat who doesn’t mind my unwashed hair), remember the friends for whom a sunray or light kiss are torture, and wonder when our BED REST protests will attract beyond the fiends who insist: “Unalive yourself.” or less overtly: “Accept the wayside.” As if Fourth page of the poem 'Third persons' that reads: for the Just World Hypothesis. We know too much. We tag along with tenured researchers investigating viral persistence, mitochondrial dysfunction. We beg doctors to follow patient forum models: open communication, expedited pattern recognition, full logging of adverse reactions. We try another off-label drug (with the necessary medical disclaimers) and risk sinking further. But the radio waves ignore us because the call has always required action. We’re owed attention, investment, justice, care. So I ask again: how many lab coats and sports coats (with lived-experience or otherwise) are necessary to spell out the catastrophe? What threshold of status or number of third persons will it take for the public to shift from not caring to exclaiming (like with every health scandal, like with all human horrors) in the passive mood: how was this ignored for so long?
July 4, 2025 at 2:20 AM
Reposted by Woozle
hazie.bsky.social
One of the most straightforward, radical, life affirming actions you can take right now is wearing a K/N95 mask. Community care & self care rolled into one easy act. Show up for yourself and your neighbors.
July 3, 2025 at 6:53 PM
Reposted by Woozle
emilyrj.bsky.social
Please donate and/or share!

I’m been having to make multiple neurosurgery trips for testing and treatment surgeries, plus trips to fix problems brain damage caused, 2+ years and counting

I need your help — Medicare, Medicaid, financial aid dont cover high costs of it all bsky.app/profile/emil...
emilyrj.bsky.social Emily Johnson @emilyrj.bsky.social · Jun 26
So half of a bone compressing my jugular is stuck in a nerve bundle and can’t be removed rn without major permanent nerve damage (other half is out)

Neurosurgeon: going to have nightmares about this! (jokes and steroids help, my bones ruining my life stays a joke) www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate* Hello everyone! This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
June 29, 2025 at 7:48 PM
Reposted by Woozle
diatoma.bsky.social
Who are #CleanAir folks who do or curate important research on the effects of air travel etc on our viromes? Reading about past pandemics, epidemics, infections in general (mortality, morbidity, new links to autoimmune illness & cancer) is scary. Then one realizes those were before air travel ✌️
hankgreen.bsky.social Hank Green @hankgreen.bsky.social · Jun 28
Hello…doing some research now on the increasing viral impact on people as we went super global as a potential driver of immune disregulation. I’ve got some good leads on the current state of research but if there’s anyone who knows anything they think I should know, please let me know!!
June 29, 2025 at 6:52 PM
Reposted by Woozle
angryhacademic.bsky.social
While I've been more or less off work the last few months, a few people have very kindly left some new testimonials 👇🥹😊

I'm slowly catching up so please excuse delayed replies, but feel free to book an appointment if you want to chat: lc-sc.co.uk/book-an-appo... 💛
⭐⭐⭐⭐⭐ I just wanted to say what a fantastic service Harriet has provided. I knew she’d be the right person to help me right from the start when she offered to adapt her usual working schedule if needed to accommodate my rest times. I had an unusual request around summarising information and evidence and she took time to talk me though her thoughts about this, being clear and honest about the potential outcomes prior to me committing to work with her. She produced an outstanding summary well within the timescale we discussed. The information she provided was detailed and really thoroughly referenced and absolutely exceeded my expectations about how much information could be provided and evidenced on the very complex topic. I would wholeheartedly recommend her service ~Anon ⭐⭐⭐⭐⭐ It was good to talk to someone who understands. The discussion and report was very thorough and we have a number of things to consider along with possible blood tests to follow up with. Thank you Harriet ~Kirsty Goodwin ⭐⭐⭐⭐⭐ I can’t tell you how good my appointment with Harriet was! She made sense of my symptoms and has produced a report on ways to proceed in order to get the correct diagnosis and therefore hopefully, treatment to improve . It was wonderful to speak to someone that understands and has vast knowledge of vaccine injury and long COVID . I would have no hesitation whatsoever in recommending her to others . Thank you so much Harriet . ~Jane Sharland
June 24, 2025 at 8:34 PM
wiredwoozle.bsky.social
Post-appointment crash continues for #SevereME patient without family support.
Food delivery cards especially helpful right now. 🍽️
Let’s help them rest & regain their baseline. 🙏🛌💕

Please share 🔁 even if you can’t give. Thanks!
#HelpSky #MutualAidBoost #PEM
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Jun 18
Posting with permission, for a #pwME unable to be here. Help needed to weather a crash. 🙏💙

⚕️ Priority items at top:
amazon.ca/hz/wishlist/...
🍽️ Food delivery:
skipthedishes.cashstar.com/store/recipi...
Gift cards to: ReiAlexandraYYC @ gmail . com (without spaces)
#MutualAidBoost #SevereME #HelpSky
June 24, 2025 at 2:21 AM
Reposted by Woozle
diatoma.bsky.social
Can I get an ETA on most media headlines going from “Mysterious malady isn’t all in your head” to the decades-overdue “The neglect & abuse of #pwME is a global health & human rights scandal”?

#GreatestMEdicalScandal #ExposeMENow #MEKills #MillionsMissing #JohnVsJonVsME #ME
June 22, 2025 at 5:31 AM
Reposted by Woozle
nlizaki.bsky.social
They blocked me so I can't report them. Please check
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Jun 22
Here is one. They DM'd me with their own PP link, hoping I would be fooled. 👿
bsky.app/profile/wire...
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Jun 22
🚨 Report and Block this account impersonating Nevra ‼️
June 22, 2025 at 5:36 PM
Reposted by Woozle
nlizaki.bsky.social
They blocked me so I can't report them
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Jun 22
🚨 Report and Block this account impersonating Nevra ‼️
Screenshot of fake account @/n-lizaki.bsky.social
June 22, 2025 at 5:36 PM
wiredwoozle.bsky.social
🚨 Report and Block this account impersonating Nevra ‼️
Screenshot of fake account @/n-lizaki.bsky.social
June 22, 2025 at 4:52 PM
Reposted by Woozle
nlizaki.bsky.social
A family member is making fake profiles with my photos. Please be careful. Thank you. Also, ER today...crashing.
June 22, 2025 at 2:09 AM
Reposted by Woozle
binitakane.bsky.social
I have seen 2 patients in clinic today whose (severe) Long Covid started with an infection in 2024. Both had experienced previous COVID infections. This really hasn’t gone away 😢
June 20, 2025 at 5:00 PM
Reposted by Woozle
drdavidkeegan.bsky.social
Still holding out hope to meet you, the first hospital or university leader who - while still in their role - says clearly that covid is airborne and it was a mistake to pretend it wasn’t.

You are awesome. You will start a chain reaction. Your courage will save millions from death and disability.
June 20, 2025 at 1:06 PM
wiredwoozle.bsky.social
This need remains unmet. 😰💔

If you live in/near Melbourne, are #CovidConscious, and have a quiet spare room...
Seriously consider opening your home to Anna. 🏠

Please share this post. 🔃
I believe the right people are out there, ready to help #SaveAnna. 💙
#DV #LongCovid #pwME #HelpSky
wiredwoozle.bsky.social Woozle @wiredwoozle.bsky.social · Apr 15
Someone in Australia PLEASE house our friend—even temporarily. She will die by #DV.

Anna has #SevereME but manages toileting. Basically she needs a bed in a quiet room, meals heated up, laundry—she can remunerate.

Details in 🧵. Or, feel free to DM me with questions. Share this post. 🔁 #SaveAnna
halcionandon.bsky.social Anna (needs a SAFE HOME) @halcionandon.bsky.social · Apr 15
Surviving on bars & what can find need out here to safe home cannot barely read can’t order all bad it worsen no help

No cops hospital.

Copsnothing but drama & yell me get own home

Hosp send home waiting no understanding torture conditions referee to services don’t exist go circles not their prob
June 19, 2025 at 4:42 AM
Reposted by Woozle
nlizaki.bsky.social
✨ I’m only $201 or 149.55£ away from making July rent! ✨

❤️ Please donate: www.paypal.com/paypalme/Sav...

And share so others can help!

💛 If you’re able to donate more, my GFM goal for medical loans, food and medical care hasn’t been met, donate here: www.gofundme.com/f/save-nevra
June 17, 2025 at 6:42 PM
Reposted by Woozle
emilyrj.bsky.social
I have 2 neurosurgeries next week, please donate, share!

Hospital financial aid hasn’t decided yet to renew my aid — if they say no, I’ll need to raise my goal by a lot

1-2 more trips will follow this one! I haven’t met my goal to afford them + travel to them

www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate* Hello everyone! This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
June 17, 2025 at 6:04 PM
wiredwoozle.bsky.social
Posting with permission, for a #pwME unable to be here. Help needed to weather a crash. 🙏💙

⚕️ Priority items at top:
amazon.ca/hz/wishlist/...
🍽️ Food delivery:
skipthedishes.cashstar.com/store/recipi...
Gift cards to: ReiAlexandraYYC @ gmail . com (without spaces)
#MutualAidBoost #SevereME #HelpSky
June 18, 2025 at 6:09 PM
Reposted by Woozle
broadwaybabyto.bsky.social
Too many people fail to understand the role poverty plays in chronic illness.

Money can’t buy health or happiness, but a lack of money can make your health worse & life harder.

Universal healthcare & basic income would do more to create a healthier society than all the “wellness” in the world.
June 17, 2025 at 3:19 AM
Reposted by Woozle
angryhacademic.bsky.social
Has anyone taken any of the following for restless leg syndrome:

• ropinirole
• pramipexole
• rotigotine skin patch

If so, how'd you get on?

www.nhs.uk/conditions/r...
June 16, 2025 at 6:33 PM
Reposted by Woozle
wiredwoozle.bsky.social
We need more eyes on Anna’s dire situation—particularly abled & resourced eyes. Please repost.

Thanks to the Canary for the assist. 🙏
Action items in screenshots. 👇
C’mon, global village! #SaveAnna 🌏💪💙💕
#SevereME #pwME #DV #LongCovid #CovidIsNotOver
Screenshot (1 of 2) from quoted article. ...Anna’s urgent needs. These are: A room in a quiet home with Covid conscious masking. Anna has explained that she can pay rent, but she will need some care assistance. She has already qualified for funding support for this, so can provide for meals and some care hours. There’s a prospect of Carer’s Allowance if the person can assist her long-term. Once she has secured a room in a safe home, she will need a way to move safely, with consideration for her severe ME and mitigating infection risk in the process. She’ll also need funding for moving costs, and aids until she has access to the NDIS. Alongside all this, she needs a disability advocate with experience of complex cases who can assist her in tandem. Separately, she is looking for someone in Australia, preferably in Victoria, to help do verbal communication tasks. Anna has everything they would require documented, so just needs someone to sit on the phone. Screenshot (2 of 2) from quoted article. It’s shameful that a person living with severe ME in a wealthy and enormously-resourced country can count on neither the state or specialist services to help her get care, and leave an abusive household. Change for people living with ME continues to move at a glacial pace – but people like Anna can’t wait for it – because by now, it’s already too little, too late. In the meantime, if you want to support Anna financially as she prepares to build a life away from abuse and are in a position to do so, her international crowd-funder can be found here. If you live in Australia you can send support to @halcionandon through Beem. Anna would be especially grateful for gift-cards through Amazon (to halcionandon@gmail.com) or Beem, to afford basics. Featured image via the Canary
April 2, 2025 at 7:03 PM
Reposted by Woozle
halcionandon.bsky.social
No more abuse please. I just want a peaceful life and I can’t even have the basics.

I had to choose a violent home because I have no where to go. Nobody wants to help anyone severely Ill. Try all the help numbers you want. Nobody wants to help.
No body should have to choose between a violent home and homelessness.
June 15, 2025 at 4:44 AM
Reposted by Woozle
broadwaybabyto.bsky.social
If you made it this far, please remember that the person behind the avatar is just that… a person.

They’re not a “brand”. They’re not bulletproof just because they have a following.

They will be hurt by things you say and do.
June 13, 2025 at 3:44 AM
Reposted by Woozle
nlizaki.bsky.social
I know there’s so much going on, but please boost this post even if you can’t donate!

I still need $709.86 or 524.43£ to make rent or I will be homeless! This during temporary moving due to water damage/mold that made me even more ill

Please help! #RentFund www.paypal.com/paypalme/Sav...
June 13, 2025 at 4:37 AM