Liz Nevra A.
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nlizaki.bsky.social
Liz Nevra A.
@nlizaki.bsky.social
850 followers 580 following 370 posts
#MEActionNetwork health activist. Patient, project manager, translator & polyglot. ✊🏾 #Stoic #WoC @NLizaki & @SaveLizNevra on Twitter. #MyalgicEncephalomyelitis since 6. 28 now. #PMDD #hEDS #POTS #MCAS #LongCovid
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nlizaki.bsky.social
Liz Nevra A. @nlizaki.bsky.social · Aug 19
Iman here 💜 URGENT: Our friend Nevra is paralyzed with very severe ME/CFS in Pakistan & at risk of being forced back into DV. Needs 2–3 months of care + a local ally to get her to the ER. This is life or d*ath.

🙏🏿 Donate/share: paypal.me/SaveLizNevra & gofundme.com/f/save-nevra
#SevereME #MutualAid
nlizaki.bsky.social
youtu.be/v6xm__7R8-Y?...

July was a costly month as it was the month we got Nevra away from mouldy lodgings.
July 2025 expenditure
YouTube video by Nevra Elisavet A
youtu.be
November 20, 2025 at 2:16 AM
nlizaki.bsky.social
Raffle for Nevra - US Edition!

4 prize bundles to win - $6.50 per entry or $15.50 for 3 entries - deadline midnight 30 November PST!

Video description: Annie is a white woman with long dark hair wearing a blue and purple fluffy zip up jumper and talking directly to the camera.
November 18, 2025 at 7:42 PM
nlizaki.bsky.social
🧵1/
Help Nevra’s team reach Jameela Jamil. Your voice genuinely matters.
Email template + link in the highlight folder: personalize it, add your signature, and send.
🔗 tinyurl.com/Nevra-Open-Letter
🕊 Every message helps amplify Nevra’s story.
November 17, 2025 at 3:51 AM
nlizaki.bsky.social
🤎🧡 Save Nevra – November Update 🤎🧡
Nevra’s health is in severe decline. She can’t eat solids or tolerate shakes and has almost no local support. She’s fainting, shivering, experiencing paralysis, swelling, and severe reactions to food + mold. She urgently needs help.
Graphic reads "‘Save Nevra - November Update A massive thank you to everyone who has donated to Nevra! Your generosity is supporting Nevra through a drastic health decline and extremely challenging time which unfortunately is still ongoing. Nevra can't eat solid food anymore due to severe pain and isn't tolerating meal replacement shakes either. She has no local allies who are currently available and limited funds, so she cannot be hospitalised for her nonstop fainting, shivering, paralysis, swelling and newer allergies. Her skin reactions continue if she tries to eat anything or is exposed to mouldy belongings and she is mostly asleep so struggling to attend telehealth. November goals: 1. £1010 / $1316 USD remaining for rent 2. $700 / £532 for app with EDS specialist geneticist 3. £202 / $263 USD for care Rent and deposit donation link: PayPal.me/SaveLizNevra GoFundMe link for food, IV fluids, caregiver costs: GoFundMe.com/f/save-nevra" Graphic reads "‘Save Nevra - November update Nevra is still barely able to communicate with us and is now worried she will die from malnutrition. Securing international expert consultants continues to be difficult due to Nevra's location and situation. Local ERs do not treat Nevra & local shelters will not house her, due to the complexity of her illnesses. She escaped DV and it is vital she remains able to financially sustain herself. Therefore, she needs international support to have access to food, accommodation & medical care, plus local nurses & other local help to support her. Please share, comment, like & donate if you can to keep her housed and alive! Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food, IV fluids, caregiver costs: GoFundMe.com/f/save-nevra"
November 14, 2025 at 7:21 AM
nlizaki.bsky.social
💙Continuing Nevra's advocacy work💙

Weakness and paralysis are not the same.
In Severe ME/CFS, paralysis isn’t just “feeling weak” — it’s the body’s loss of nerve control over the muscles.

Patients describe moments when the brain sends signals to move… but the body simply can’t.
Slide 1 reads "weakness vs paralysis in severe ME/CFS: understanding the difference" Slide 2 reads: "weakness vs paralysis in severe ME/CFS. Paralysis: the inability to produce movement due to loss of function in nerves controlling the muscles. What weakness feels like: a sensation of heaviness and lack of strength in the muscles." Slide 3 reads: "muscle weakness refers to a reduced ability to voluntarily contract muscles. In severe ME/CFS, muscle weakness is often marked and widespread" Slide 4 reads "triggers of paralysis: overexertion, stress, and cold temperatures."
November 10, 2025 at 7:53 PM
nlizaki.bsky.social
1/3
🌺 Nevra’s Raffle: US Edition 🌺

Help raise funds for Nevra’s housing, carers & urgent medical treatment — and win 1 of 4 amazing prize bundles (Squishables, books, crystals, jewellery & more!) 💜
Image 1: Purple background with the title “Nevra’s Raffle: US Edition” at the top and all of the raffle prizes pictured in the lower half. There are illustrations of tickets at the borders and a subheading that states “4 chances to win! Take a look at the prizes”. Image 2: Purple background with illustrations of tickets at the borders. In the middle, there is a piece of plain white paper covered by a section of text with three paragraphs describing “Nevra’s current situation”, alongside a photograph of Nevra. Image 3: Purple background with illustrations of tickets at the borders. In the middle, there is a piece of plain white paper covered by a section of text that describes “What are we fundraising for?” in three paragraphs. Image 4: Purple background with illustrations of tickets at the borders. In the middle, there is a piece of plain white paper covered by a section of text that describes “How to enter the raffle and support Nevra”.
November 6, 2025 at 6:24 AM
nlizaki.bsky.social
Hello everyone. This is M. (Nevra's partner) I would really appreciate it if you could share the post about volunteers that Devi made for Nevra. It is the previous post on this page.

Thank you so much!💙
#severeme #VerySevereME
November 5, 2025 at 1:34 AM
nlizaki.bsky.social
🧵 1/3
URGENT: Disabled Pakistani advocate Nevra is in critical condition — surviving on IV fluids, unable to eat solid food, and still trying to coordinate her own medical care.

She’s spent years fighting for others with neglected illnesses. Now, she needs us.
Slide 1: URGENT CALL FOR CARE & SUPPORT FOR SEVERELY DISABLED & CHRONICALLY ILL PAKISTANI WOMAN Nevra is a chronically ill advocate who’s been fighting for her life while raising awareness for millions with neglected illnesses across the Global South. Right now, she’s in a critical condition and has almost no consistent support. We urgently need reliable volunteers who can help with light but vital tasks — making appointment notes, analysing lab results, researching, and drafting or sending emails to doctors. Even small, steady help (an hour a week) can make a real difference. If you have spoons to spare and want to stand beside a disabled woman who’s spent years advocating for others while receiving almost none of the care she deserves — please reach out. Your help could literally save a life. Slide 2: Our team currently has 22 members, but only a few have the capacity to stay active — which makes it look like Nevra has much more help than she actually does. In reality, she’s surviving on IV fluids and small candies, unable to eat solid food for weeks, yet still trying to manage critical medical coordination alone. We urgently need a few reliable volunteers who can help with practical tasks like making appointment notes, analysing bloodwork, researching treatment options, and drafting or sending emails to doctors and specialists. Even a small, steady contribution — an hour a week — can ease the immense burden she’s carrying and quite literally help keep her alive. Please step forward if you can commit, even in small ways. Slide 3: If you can commit time, then please reach out to devi through Instagram or via their Linktree. @the.chthonic.doula on Instagram https://linktr.ee/the.chthonic.doula
October 31, 2025 at 9:22 PM
nlizaki.bsky.social
Links to donat/share:

gofundme.com/f/save-nevra

PayPal.com/paypalme/SaveLizNevra

Every share, donation, and act of support
matters. Let's fight to keep Nevra alive!

#MutualAid #pwME #SevereME #DisabilityJustice #Fundraiser
#SevereMECFS #SevereME #VerySevereME #DomesticViolence
October 30, 2025 at 4:09 AM
nlizaki.bsky.social
I’m begging from the bottom of my heart — please take a moment to read and share Nevra’s story.
She’s fighting for her life with Very Severe ME, trapped where care doesn’t exist.
Her death is preventable — if people act.

#SaveLizNevra #PwME #VerySevereME
October 30, 2025 at 4:07 AM
nlizaki.bsky.social
Community help request
Hi. We are all burntout from trying to set up fundraising for Nevra, local help, reasoning with the hospital, a doula & a long list.
If anyone who is data savvy can help us with our Whole Genome Sequencing results, would take one thing off our plate.
Thanks for reading.
October 26, 2025 at 12:08 PM
Reposted by Liz Nevra A.
somethingchronic.bsky.social
Can you help in any way please:
@actionforme.bsky.social
@meassociation.org.uk
@thereforme.bsky.social
?

#DontletMEdie #SevereME #JusticeForME #UnitedForME
nlizaki.bsky.social Liz Nevra A. @nlizaki.bsky.social · 26d
1/N Nevra’s d3ath is preventable.

If the right people take action — by recognising ME/CFS, allowing safe home visits, and coordinating specialist care — she can survive.

What’s needed now isn’t sympathy. It’s intervention.

#MEcfs #pwME #MillionsMissing
October 25, 2025 at 11:32 PM
nlizaki.bsky.social
1/N Nevra’s d3ath is preventable.

If the right people take action — by recognising ME/CFS, allowing safe home visits, and coordinating specialist care — she can survive.

What’s needed now isn’t sympathy. It’s intervention.

#MEcfs #pwME #MillionsMissing
October 24, 2025 at 9:51 PM
nlizaki.bsky.social
1/3 thread
💙Update on Nevra💙
Our friend Nevra has Very Severe ME and is in critical condition in Pakistan, where ME isn’t recognized.

#SaveNevra #pwME #SevereME #DisabilityJustice #MillionsMissing
October 22, 2025 at 8:20 PM
nlizaki.bsky.social
💖 Save Nevra – October Update 💖 1/2 (thread)

Nevra is in severe medical decline after mold exposure & overexertion while fundraising beyond her limits.

💜 PayPal.me/SaveLizNevra
💜 GoFundMe.com/f/save-nevra

#SaveLizNevra #SevereME #MECFS #MillionsMissing
October 18, 2025 at 8:59 PM
nlizaki.bsky.social
youtu.be/wXkZrqawhiQ?...
Please read the caption. Thanks 💙
June 2025 expenditure
YouTube video by Nevra Elisavet A
youtu.be
October 18, 2025 at 12:26 AM
nlizaki.bsky.social
Part 1- Nevra got ME at 6, missing her childhood — and now her 20s are being stolen too. She’s still so ready to live but has declined further and can no longer make videos.

www.gofundme.com/f/save-nevra

#MutualAid #pwME #SevereME #DisabilityJustice
#DomesticViolence
#mecfs
October 16, 2025 at 5:21 PM
nlizaki.bsky.social
Medical neglect continues to kill.
Another blue rose.
#pwME #Obituary #MillionsTrulyMissing
October 15, 2025 at 5:40 PM
Reposted by Liz Nevra A.
pumpkinstars.bsky.social
the times i can’t move at all even when i want to have been so awful

at my most severe this happened often. even when there was an emergency, my body would not move.

i never want to get that bad ever again
but i will. some day.

enjoying what i have now while i have it 💙💙💙
nlizaki.bsky.social Liz Nevra A. @nlizaki.bsky.social · Oct 14
💙 Why Very Severe ME/CFS Can Cause Paralysis 💙

It’s not psychological — it’s biological.
⚡ Energy failure, nerve signal breakdown, brainstem inflammation, blood flow collapse, & autoimmunity can all cause paralysis in ME/CFS.
Slide reads "why does very severe ME/CFS cause paralysis? It's not psychological- it's biological" Nerve signals don't always reach the muscles. Similar to myasthenia gravis. Brain sends the message...but muscles don't fire. Muscles run out of energy. Faulty mitochondria = no ATP. No ATP = no contraction. Muscles can literally shut down. Paralysis in severe ME/CFS = biological collapse. Energy depletion, signal breakdown, brainstem/autonomic dysfunction. This is real. This is physical. This is ME.
October 14, 2025 at 10:30 PM
nlizaki.bsky.social
The same post exists on FB, Twitter, Instagram, B$ky, and TikTok, so please consider boosting there so we can get out of the echo chamber! All hands on deck!
nlizaki.bsky.social Liz Nevra A. @nlizaki.bsky.social · Oct 14
💙 Why Very Severe ME/CFS Can Cause Paralysis 💙

It’s not psychological — it’s biological.
⚡ Energy failure, nerve signal breakdown, brainstem inflammation, blood flow collapse, & autoimmunity can all cause paralysis in ME/CFS.
Slide reads "why does very severe ME/CFS cause paralysis? It's not psychological- it's biological" Nerve signals don't always reach the muscles. Similar to myasthenia gravis. Brain sends the message...but muscles don't fire. Muscles run out of energy. Faulty mitochondria = no ATP. No ATP = no contraction. Muscles can literally shut down. Paralysis in severe ME/CFS = biological collapse. Energy depletion, signal breakdown, brainstem/autonomic dysfunction. This is real. This is physical. This is ME.
October 14, 2025 at 10:33 PM
nlizaki.bsky.social
💙 Why Very Severe ME/CFS Can Cause Paralysis 💙

It’s not psychological — it’s biological.
⚡ Energy failure, nerve signal breakdown, brainstem inflammation, blood flow collapse, & autoimmunity can all cause paralysis in ME/CFS.
Slide reads "why does very severe ME/CFS cause paralysis? It's not psychological- it's biological" Nerve signals don't always reach the muscles. Similar to myasthenia gravis. Brain sends the message...but muscles don't fire. Muscles run out of energy. Faulty mitochondria = no ATP. No ATP = no contraction. Muscles can literally shut down. Paralysis in severe ME/CFS = biological collapse. Energy depletion, signal breakdown, brainstem/autonomic dysfunction. This is real. This is physical. This is ME.
October 14, 2025 at 9:38 PM
nlizaki.bsky.social
From Nevra's drafts 2024:

Escaping mold & DV for a day

#Nature #Flowers #Trees #Colours #Subtropical #Palm #PinkFlowers #PurpleFlowers #FlowerBeds #TouchGrass

Please continue boosting Nevra's story for visibility www.gofundme.com/f/save-nevra
October 10, 2025 at 3:19 AM
nlizaki.bsky.social
🚨 Raffle for Nevra - 48 hours to go!🚨

🎉 2 Prize Bundles 🎉
💐 Pet embroidery, Lego, treats & more
📚 Audiobooks, crochet, zines & more
UK only!
Slide reads "Nevra raffle! Incredible prizes to be won until midnight October 8th. Bundle 1 includes a floral Lego set and personalized embroidered pet by @ shinyshinybangbang. Bundle 2 includes a crochet bee and craft box by Chronic Craft Club. There are more prizes in each bundle too! UK only! Slide reads: Two bundles, two chances to win! I'll be honest, we haven't had nearly as many donations as we need to support Nevra to cover essential costs. The upside of this is that your chances of winning a prize bundle are pretty good! Bundle 1 contains: Lego bouquet set, customized mask chain, customized pet portrait, and selection of Scottish treats. Bundle 2 contains: crocheted bug of your choice, November's Chronic Craft Club pack, Zine selection, and LibreFM audiobook bundle. Slide reads: Why are we fundraising? Our friend Nevra has severe ME and multiple comorbidities. She lives in Pakistan, where there is virtually no suitable health or social support for ME patients. She has escaped from DV, but she lives under constant risk of being taken back to the DV situation, especially as she remains unable to care for herself. Recently, Nevra's health has worsened to very severe ME, and she has experienced episodes of paralysis, repeated fainting, and severe skin infections. Nevra needs ongoing financial support in order to cover basic needs such as accommodation, healthcare costs, food, and other essentials. If you can't donate yourself, there are other ways to help! Swipe to find out how. Slide reads: How to enter and support. To enter, donate £5 for one entry or £12 for 3 entries to Nevra's GoFundMe or PayPal. Screenshot proof of your donation and send it to @ helon_melon__ on instagram. PayPal link: paypal.com/paypalme/saveliznevraofficial or GoFundMe link: gofundme.com/f/save-nevra. Although we can only cover shipping within the UK, if you are outside the UK you can still donate and nominate someone else to win the prizes (or send them on to you) if you win! Can't donate? There are still other ways to help. Save, share, like, and comment on this post to help us reach those who can donate. We are also looking for a volunteer with a public account to collect donation screenshots for our US raffle, starting soon. If you can help, please DM @chronic.craft.club on Instagram.
October 7, 2025 at 4:44 AM
nlizaki.bsky.social
Urgent: Nevra has waited since 2017 for immunology tests not available in Pakistan. Her immune system is failing. She needs samples sent abroad to survive since she can't travel.

Every £ helps her reach care + dignity. Please donate & share!
gofundme.com/f/save-nevra

#SaveLizNevra #pwME
October 6, 2025 at 5:30 PM
nlizaki.bsky.social
🚨 Raffle for Nevra 🚨

🎉 2 Prize Bundles 🎉
💐 Pet embroidery, Lego, treats & more
📚 Audiobooks, crochet, zines & more
UK only!
September 29, 2025 at 10:21 PM