iiinova — where your digital self keeps evolving

Reposted by Woozle

Woozle @wiredwoozle.bsky.social · 19/06/2025

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

01010

Reposted by Woozle

Hazie @hazie.bsky.social · 03/07/2025

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.

1268113

Reposted by Woozle

Emily Johnson @emilyrj.bsky.social · 29/06/2025

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...

057

Reposted by Woozle

María Richardson @diatoma.bsky.social · 29/06/2025

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 ✌️

0199

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 24/06/2025

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

053

Woozle @wiredwoozle.bsky.social · 24/06/2025

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

011

Reposted by Woozle

María Richardson @diatoma.bsky.social · 22/06/2025

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

33613

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 22/06/2025

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

021

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 22/06/2025

They blocked me so I can't report them

031

Woozle @wiredwoozle.bsky.social · 22/06/2025

🚨 Report and Block this account impersonating Nevra ‼️

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

121

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 22/06/2025

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

132

Reposted by Woozle

Binita Kane @binitakane.bsky.social · 20/06/2025

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 😢

818974

Reposted by Woozle

David Keegan @drdavidkeegan.bsky.social · 20/06/2025

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.

619762

Woozle @wiredwoozle.bsky.social · 19/06/2025

01010

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 17/06/2025

✨ 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

paypal.com

Pay Adrian Bamforth using PayPal.Me

Go to PayPal.Me/SaveLizNevra and enter the amount. It's safer and more secure. Don't have a PayPal account? No problem.

044

Reposted by Woozle

Emily Johnson @emilyrj.bsky.social · 17/06/2025

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...

gofundme.com

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

11113

Woozle @wiredwoozle.bsky.social · 18/06/2025

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

000

Reposted by Woozle

Kelly @broadwaybabyto.bsky.social · 17/06/2025

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.

451860570

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 16/06/2025

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...

124

Reposted by Woozle

Woozle @wiredwoozle.bsky.social · 02/04/2025

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

053

Reposted by Woozle

Anna - Please boost pinned tweet.🙏 @halcionandon.bsky.social · 15/06/2025

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.

032

Reposted by Woozle

Kelly @broadwaybabyto.bsky.social · 13/06/2025

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.

1443

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 13/06/2025

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...

paypal.com

Pay Adrian Bamforth using PayPal.Me

Go to PayPal.Me/SaveLizNevra and enter the amount. It's safer and more secure. Don't have a PayPal account? No problem.

032

Reposted by Woozle

David @dpmillau.bsky.social · 11/06/2025

Anyone know of any Long Covid aware GPs in Port Macquarie NSW AUstralia, for a friend. #longcovid #portmacquarie

021

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 11/06/2025

Hello friends I’m so ill from moving temporarily due to water damage and mold I need $693.98 or 513.82£ for my July rent due in 20 days! Please donate, repost this #RentFund post so others see it Donate here: www.paypal.com/paypalme/Sav... I can’t repay surgical loans unless my rent is covered 🙏🏽

paypal.com

Pay Adrian Bamforth using PayPal.Me

Go to PayPal.Me/SaveLizNevra and enter the amount. It's safer and more secure. Don't have a PayPal account? No problem.

053

Reposted by Woozle

Emily Johnson @emilyrj.bsky.social · 11/06/2025

Hi and best wishes to the many followers I recently gained! ICYDK, I’ve been needing ongoing long-distance neurosurgical care that is expensive and tough 2 more surgeries in 2 weeks! Maybe 1-2 more after plus more if more tests are needed Please donate, repost www.gofundme.com/f/help-emily...

gofundme.com

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

0710

Reposted by Woozle

Laurie Dunkin Wedd @ldw1.bsky.social · 08/06/2025

I cannot fully express the sheer impossibility for an ME sufferer of tackling this sort of need. I hope someone will help.

111

Reposted by Woozle

Niko Suvisto @nikosuvisto.com · 08/06/2025

It wasn’t any regular Wednesday morning, exactly three years ago, as I woke up trapped in my own body. Not knowing I wouldn’t even be able to bear a ray of light entering my bedroom or endure the touch of another human being. 1/13 #MECFS #VerySevereMECFS #Photograpghy

A black and white close up photograph of Niko’s face, a white man, with a dark beard, resting his head on a pillow, wearing an eye mask and ear muffs. The image is distorted on the sides of his face, a ghostly effect that makes the ear muffs appear twice.

1174

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 06/06/2025

Quick June update: Hope to make July rent fast, focus on paying surgery loans! Please donate, boost this ❤️ Rent fund: www.paypal.com/paypalme/Sav... 💙 Help me pay surgery loans here: www.gofundme.com/f/save-nevra Very ill currently due to mold, moving, landlord construction to fix water damage

A pink and purple graphic depicting yellow, pink and purple flowers with pink and purple hands reaching out to each other reads:

Support Nevra - June Update:

Thanks to everyone who donated in June!
Your generosity helped Nevra through medical crises after her surgery.
She needs help paying surgery loans now!

GFM link for surgery bills, food, medical needs here! £2,500 aka $3,504 needed.
GoFundMe.com/f/save-nevra

This month's rent is due June 30! Thanks to your help, £450 aka $609 in donations exceeded June rent, now used for July rent.
We need £529.79 aka $716.75 for July still.

Rent link here! Needed by June 30.
PayPal.com/paypal/me/saveliznevra

More links in @SaveLizNevraOfficial's bio!

A pink and purple graphic depicting yellow, pink and purple flowers with pink and purple hands reaching out to each other reads:

Support Nevra:

Since the May surgery, which left her endometriosis untreated, Nevra's CCI and POTS have flared significantly. She's fainting daily. Local ERs won't treat her.

She needs urgent and ongoing medical care - but she's in debt, disabled, and without family support. Pakistan shelters won't accept her because she's too disabled to work and unmarried.

This fundraiser helps her pay surgery loans, stay housed, afford food, cover ongoing acute and chronic medical needs.

Please donate or share. Help her hold on!
Links in @SaveLizNevraOfficial's bio!

063

Reposted by Woozle

Sickandtiredaus Jordan Crane @sickandtiredaus.bsky.social · 06/06/2025

Please complete the below survey, no matter what state or country you are from, answering question 6, which asks if this should be removed and in the free text sections talk to the importance of healthy environments, including clean air, respirator masks and not attending school when sick. 2/3

1112

Reposted by Woozle

The Real McCoy @rippermd41.bsky.social · 05/06/2025

Recently saw someone write "the thought of going to a new doctor makes me feel ill." Me too, internet stranger. Me too 😔 I had over 10 years of dismissal and gaslighting for CRPS, psoriatic arthritis, hypermobility and dysautonomia. But with #MECFS the stakes are high 🧵

1144

Reposted by Woozle

Emily Johnson @emilyrj.bsky.social · 30/05/2025

A disabled graphic designer, Marketa, made this to help raise donations for my neurosurgical fundraiser! Please boost this post Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible Donate here: gofundme.com/f/help-emily-get-medical-care 1/2

A pink, blue and purple pastel graphic with a flower and starts depicts an image of me, a smiling white woman with long brown hair with bangs wearing a black jacket, along with text reading:

Save Emily!
FUNDRAISER FOR LIFESAVING MEDICAL TREATMENT.
Emily Johnson, a dedicated journalist, researcher and mutual aid organiser has battled severe, lifelong, life-threatening disabilities that have kept her from working, driving, living independently. Now 35, she finally has access to critical neurosurgical care - but she urgently needs financial support to afford it. Medicaid and Medicare are currently not meeting the full cost of medical care. Your support will help Emily regain stability and independence.
Every donation, share, and kind word makes a difference!
Current goal: $6,500.
• At least 2 more trips to New York for neurosurgical testing & treatment (possibly more trips if further testing is needed).
• Specialist care for spine, brain, and head conditions.
• AirBnb, rental car, gas, food costs, and essential medical equipment and supplies.
Donate via:
gofundme.com/f/help-emily-get-medical-care

11115

Reposted by Woozle

Lygia Navarro (she/ella) ♿️ + 🏳️‍🌈 💜 🏳️‍⚧️ @lygianavarro.com · 03/06/2025

Hey there, any tips for how to get my Bluesky feed to resemble the community and conversation and debate on Twitter? I think the non-algo here makes it so that I just get post after post, but there's no cohesion, so no conversation. Thanks for any insight.

032

Woozle @wiredwoozle.bsky.social · 04/06/2025

Seeking an Australian who hates ableism! Could you make a phone call this week on behalf of a disabled person? ☎️ Anna can provide details in writing, she just needs someone to communicate with her doctor’s office via telephone. More below (from X) ⏬ #SevereME #DV #SaveAnna

123

Reposted by Woozle

Hazie @hazie.bsky.social · 02/06/2025

Anyone tried lowish-dose (10mg) Vyvanse for Long Covid or ME?

122

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 01/06/2025

We reached our goal and more. Update coming soon. #SaveLizNevra in Pakistan

042

Woozle @wiredwoozle.bsky.social · 01/06/2025

It is now June 1 in Pakistan. If you see this post and can donate to help #SaveLizNevra, please do. 🙏 Please share to reach more donors. Thank you. ❤️ #DV #pwME #SevereME #LongCovid #HelpSky #MutualAidBoost #Emergency #DisabilityCrowdFund

032

Reposted by Woozle

Liz Nevra A. @nlizaki.bsky.social · 31/05/2025

🙏🏽 Please, please boost this post and donate to my rent fund: www.paypal.com/paypalme/Sav... 🚨 Rent is due June 1, I need $382.77 or I’ll be homeless 🚨 Pakistan shelters won’t take me as I’m too disabled to work and unmarried — with nowhere to go, I will not survive, I need your help

paypal.com

Pay Adrian Bamforth using PayPal.Me

Go to PayPal.Me/SaveLizNevra and enter the amount. It's safer and more secure. Don't have a PayPal account? No problem.

044

Reposted by Woozle

Woozle @wiredwoozle.bsky.social · 28/05/2025

Friends, let’s keep boosting these posts to keep our beloved Nevra safely housed. Even if you can’t donate, someone who follows you probably can! 💕 Some might even feel moved to give on a monthly basis. Stability would be so helpful. 🙏 #SaveLizNevra #DV #HelpSky #LongCovid #pwME #NEISVoid

045

Woozle @wiredwoozle.bsky.social · 28/05/2025

045

Reposted by Woozle

Emily Johnson @emilyrj.bsky.social · 28/05/2025

I’ve only received a few donations for months — getting nervous about not having the funds to get all of the neurosurgical care I need! Medicare, SSDI don’t cover it all I go back to Mount Sinai for two more neurosurgeries in June, please share if you can’t donate www.gofundme.com/f/help-emily...

gofundme.com

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

42330

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 28/05/2025

3. A change from a patients own norm can be much more important than comparisons to population averages

142

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 28/05/2025

2. Comorbidities can impact core body temperature, for example, dysautonomia is well known to cause weird body temperatures. Many patients even frequently go into what is technically hypothermia (< 35 °C) but just ride it out at home because its their normal

131

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 28/05/2025

🗣️ 📣 Some reminders to healthcare professionals out there: 1. Core body temperature is individual, with a much greater range than you may realise, and it is also decreasing with time - ~36.8 °C is probably nearer a true average: elifesciences.org/articles/49555

elifesciences.org

Decreasing human body temperature in the United States since the Industrial Revolution

Since the Industrial Revolution, normal body temperature in both men and women has decreased monotonically by 0.03°C per birth decade.

143

Reposted by Woozle

Hazie @hazie.bsky.social · 28/05/2025

“A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.” A new piece by @davetuller1.bsky.social www.openmindmag.org/articles/goi...

openmindmag.org

Chronic Denial

A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.

11812

Reposted by Woozle

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 25/05/2025

This is why it annoys me when doctors make comments like how i didnt "present severely enough". #MedSky: 👏🏻 there 👏🏻 is 👏🏻 no 👏🏻 correct 👏🏻 way 👏🏻 to 👏🏻 "present" 👏🏻

162