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Reposted by Liz Nevra A.

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

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 💙💙💙

Liz Nevra A. @nlizaki.bsky.social · 10h

💙 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.

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Liz Nevra A. @nlizaki.bsky.social · 9h

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!

Liz Nevra A. @nlizaki.bsky.social · 10h

💙 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.

Liz Nevra A. @nlizaki.bsky.social · 10h

#MECFS #MyalgicE #pwME #MillionsMissing #DisabilityJustice #Neuroimmune #AutonomicDysfunction

Liz Nevra A. @nlizaki.bsky.social · 10h

🧠 Studies show:
* Nerve signalling disruption (Loebel 2016; Scheibenbogen 2018)
* Energy collapse (Naviaux 2016; Fluge 2016)
* Brainstem inflammation (Nakatomi 2014; Nelson 2021)
* Blood flow crash (van Campen 2021)

Immune attack on receptors. Autoantibodies block signals. Nerves and muscles can't "hear" each other. Same mechanism as autoimmune diseases.

Autonomic nervous system collapse. Sudden BP drops. Brain doesn't get enough blood. Movement signals can shut off.

Brainstem inflammation disrupts movement. Brainstem controls motor signals. Inflammation scrambles them.

Severe ME/CFS paralysis evidence map. Nerve signals don't always reach muscles (Loebel et al. 2016; Scheibenbogen et al. 2018). Muscles run out of energy (Naviaux et al. 2016, Fluge et al. 2016). Brainstem inflammation disrupts movement (Nakatomi et al. 2014, Nelson et al. 2021). Blood flow to brain crashes (van Campen et al. 2021). Immune attack on receptors (Loebel et al. 2016, Scheibenbogen et al. 2018).

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Liz Nevra A. @nlizaki.bsky.social · 10h

💙 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.

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Liz Nevra A. @nlizaki.bsky.social · 5d

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

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Liz Nevra A. @nlizaki.bsky.social · 8d

Hashtags: #pwME #MECFS #Spoonie #SpoonieCommunity #ChronicIllness

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Liz Nevra A. @nlizaki.bsky.social · 8d

Prizes donated by incredible community members (IG accounts)
@shinyshinybangbang
@nikkaayyy_c
@chronically.theo
@chronic.craft.club
@kerricrochetcreations
@liliomwrites

🔗 Full raffle post & prizes: www.instagram.com/p/DOtj3ifjAP...

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Liz Nevra A. @nlizaki.bsky.social · 8d

‼️ For legal purposes, this raffle should be considered a prize draw. Max 1 free entry per person, via post. Please contact @ helen_melon__ on Instagram for details.

Nevra is extremely unwell w/ paralysis, fainting & infections. Care in Karachi is poor & she needs global support.

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Liz Nevra A. @nlizaki.bsky.social · 8d

Enter:
👉 Donate £5=1 entry / £12=3
👉 paypal.com/paypalme/saveliznevraofficial or gofundme.com/f/save-nevra
👉 Send proof to @ helen_melon__ (Instagram only)
👉 UK only (others can donate & gift a UK friend!)
🕛 Deadline: EXTENDED til Oct 8, midnight BST

Get your very own PayPal.Me link

Post it. Text it. Tag it. Share it. Shout it. And let your friends pay you back in a tap or two. Grab your PayPal.Me link today.

paypal.com

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Liz Nevra A. @nlizaki.bsky.social · 8d

🚨 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.

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Liz Nevra A. @nlizaki.bsky.social · 8d

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!

Liz Nevra A. @nlizaki.bsky.social · 8d

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

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Liz Nevra A. @nlizaki.bsky.social · 15d

🔗 Full raffle post & prizes: www.instagram.com/p/DOtj3ifjAP...

Image description: Mo (white, long ginger hair, blue glasses) sits on her bed and talks directly to camera. Images of the prizes pop up on screen as they are discussed.

Hashtags: #pwME #MECFS #Spoonie #SpoonieCommunity #ChronicIllness

Login • Instagram

Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

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1

Liz Nevra A. @nlizaki.bsky.social · 15d

Prizes donated by incredible community members (insta accounts)
@ shinyshinybangbang
@ nikkaayyy_c
@ chronically.theo
@ chronic.craft.club
@ kerricrochetcreations
@ liliomwrites

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Liz Nevra A. @nlizaki.bsky.social · 15d

Nevra is extremely unwell w/ paralysis, fainting & infections. Care in Karachi is poor & she needs global support. Please do check previous reel for more info.

Funds = safe housing, carers & medical care. Let’s hold Nevra in solidarity on her 30th, 24 yrs w/ M.E., 7 yrs Severe ME 💔

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Liz Nevra A. @nlizaki.bsky.social · 15d

Enter:
👉 Donate £5=1 entry / £12=3
👉 PayPal: paypal.com/paypalme/saveliznevraofficial or GFM: gofundme.com/f/save-nevra
👉 Send proof to @ helen_melon__ (insta)
👉 UK only (others can donate & gift a UK friend!)
🕛 Deadline EXTENDED til Oct 8
‼️ This is a prize draw. Max 1 free entry per person.

Get your very own PayPal.Me link

Post it. Text it. Tag it. Share it. Shout it. And let your friends pay you back in a tap or two. Grab your PayPal.Me link today.

paypal.com

1

Liz Nevra A. @nlizaki.bsky.social · 15d

🚨 Raffle for Nevra 🚨

🎉 2 Prize Bundles 🎉
💐 Pet embroidery, Lego, treats & more
📚 Audiobooks, crochet, zines & more
UK only!

1

Liz Nevra A. @nlizaki.bsky.social · 17d

❤️ Save Nevra ❤️

You can enter the raffle by donating to Nevra’s GFM or PP (links in pinned post @nlizaki.bsky.social) and sending a screenshot of your donation to @ helen_melon__ on Instagram. £5/entry or £12 for three.

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · Aug 30

gofundme.com/f/save-nevra

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! #pwME #MutualAid #DisabilityJustice
#SevereME #VerySevereME #DomesticViolence

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · Sep 10

Karachi is flooded again. If Nevra is taken back home:
❌ She loses phone access
❌ Trapped again in DV
❌ No IV fluids or care

We urgently need:
1️⃣ Donations for 2–3 months of care/safety

❤️ PayPal.com/paypalme/SaveLizNevra

💙
GoFundMe.com/f/save-nevra

#MutualAid #pwME
#SevereME #DomesticViolence

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · Sep 14

All funds raised by this raffle will go towards safe housing, carers, & medical treatment for our dear friend, & will ensure she doesn’t have to return to a DV situation. Thank you for your support ❤️ #MutualAid #pwME
#SevereMECFS #SevereME #DomesticViolence #Birthday #MillionsMissing #SolarReturn

Liz Nevra A. @nlizaki.bsky.social · Sep 14

www.instagram.com/p/DOYrWoriJz...

🌺 Nevra’s 30th Birthday Raffle 🌺

www.gofundme.com/f/save-nevra

#MutualAid #pwME
#SevereMECFS #SevereME #DomesticViolence #Birthday #MillionsMissing #SolarReturn

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · 23d

Felt sad, hurt, solidarity & anger at #BellaHadid & #YolandaHadid 's posts? You’re not alone.

💙 Same Conditions, Different Realities 💙
We share the same illnesses — Lyme, POTS, PMDD, MCAS — but not the same access.

💔 Illness doesn’t discriminate.
💸 Access to care does.

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · Sep 14

www.instagram.com/p/DOYrWoriJz...

🌺 Nevra’s 30th Birthday Raffle 🌺

www.gofundme.com/f/save-nevra

#MutualAid #pwME
#SevereMECFS #SevereME #DomesticViolence #Birthday #MillionsMissing #SolarReturn

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Reposted by Liz Nevra A.

Liz Nevra A. @nlizaki.bsky.social · 22d

www.instagram.com/p/DOtj3ifjAP...

🌺 Nevra’s 30th Birthday Raffle 🌺

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