Woozle

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

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?

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

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.

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...

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 ✌️

Maybe? I recall hearing it's prescribed for that sometimes.

Very sorry for your loss, Katie. 💔
Losing a pet who's been a constant companion really is next-level terrible when one's physical world is so limited by this horrid disease.

⭐⭐⭐⭐⭐ 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

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... 💛

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

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

Screenshot from Clearsky. did:plc:xfajyscs2qkye44dcslzwd6e history of handle changes

The fake account has changed its username twice since its creation less than a day ago...

Please ban this user @support.bsky.team
They are impersonating vulnerable people for extortion purposes.

They blocked me so I can't report them. Please check

They blocked me so I can't report them

Take care to report/block only the fake account!

1. Impersonator's account (hyphen in username)
2. Nevra's real account (no hyphen)

Impersonator is DMing, trying to trick people into donating to *them* ‼️

Here is one. They DM'd me with their own PP link, hoping I would be fooled. 👿
bsky.app/profile/wire...

Screenshot of fake account @/n-lizaki.bsky.social

🚨 Report and Block this account impersonating Nevra ‼️

Weird. When I click on the preview ("link card" is what they call it on Bluesky, I think), it takes me to: www.paypal.com/paypalme/Sav

A family member is making fake profiles with my photos. Please be careful. Thank you. Also, ER today...crashing.

It's a mystery to me.
Maybe best to delete the post, so people won't accidentally donate to someone else's Paypal account?

Tagging @emilyrj.bsky.social but I think she might be in hospital too this week. 💙

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 😢

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.

Pay Saverio Viani using PayPal.Me Go to paypal.me/sav and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.

@nlizaki.bsky.social There are 2 different Paypal links in this post. I think this one belongs to someone else? www.paypal.com/paypalme/Sav

Maybe the URL got cut off somehow, leaving just "Sav" (from "SaveLizNevra").
😬💙

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

✨ 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

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

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...

💙🤞😰💙

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

😭😓💙

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.