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Reposted by Niko Suvisto

Liz Nevra A. @nlizaki.bsky.social · 2d

🚨 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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Reposted by Niko Suvisto

Liz Nevra A. @nlizaki.bsky.social · 2d

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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Niko Suvisto @nikosuvisto.bsky.social · 3d

As the days go by, I settle back into my strict routines, with a taste of life still lingering in my mouth. It’s always a mix of emotions; the good and the bad. Thank you to my friends for being there for me, and until next time. 9/9

A black and white photo of Niko’s point of view from his bed. The room’s curtain is halfway closed. The light that’s coming through illuminates three flower bouquets. One is sitting on top of a record player, other two are on stools.

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Niko Suvisto @nikosuvisto.bsky.social · 3d

It’s a lot to process, and it never gets easier. How could it? We are not made for captivity and isolation. The what-ifs and wants regarding my life spin in my mind stronger than usual. 8/9

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Niko Suvisto @nikosuvisto.bsky.social · 3d

The next day, I slowly start to feel it all. Like a changing tide, the anxiety rises, and I become very emotional. Seeing and feeling life has left a dent in the protective shield of my reality. 7/9

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Niko Suvisto @nikosuvisto.bsky.social · 3d

Emotionally, I feel fine. I know my partner is waiting for me, and we rest together, even though there are almost a thousand kilometres between us. I return to the familiar world I’ve lived in these past years; the black screen I’m holding in my hand turns back on. 6/9

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Niko Suvisto @nikosuvisto.bsky.social · 3d

The afternoon goes well. I had taken medication to sedate myself, as it makes the visit more bearable. Eventually, the last guests leave, and my mom closes my curtains — the show is over. 5/9

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Niko Suvisto @nikosuvisto.bsky.social · 3d

My godchild gives me a bracelet with my name on it; I put it on right away. I may be missing from their daily lives, but they still remember me. 4/9

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Niko Suvisto @nikosuvisto.bsky.social · 3d

Cheerful chatter fills the room, as if we had just seen each other yesterday. I don’t feel like an outsider; we talk about very ordinary things, which is such a welcome change. Their children shuffle in and out of my room but prefer to play with their toys outside. 3/9

A black and white photo of Niko’s point of view from his bed: his feet are resting on the bed, while a woman is standing in the left side of the image. She’s holding a child with her hand. A man looking at her sits across the room. Natural light comes into the room through a window. In the background there are personal belongings and artworks hanging on the wall.

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Niko Suvisto @nikosuvisto.bsky.social · 3d

Now, suddenly, my room is full of people, the familiar faces of my friends gathered around my bed. For a moment, it feels overwhelming; I can sense my body crossing the threshold — this is definitely overexertion. 2/9

A black and white photo of four men sitting together. They each look at a child that’s talking to one of the men. Natural light comes into the room through a window.

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Niko Suvisto @nikosuvisto.bsky.social · 3d

It was my birthday two weeks ago, and I managed to celebrate it with my friends. I hadn’t seen them all year because my health hasn’t allowed it. My days are spent in isolation; usually only my mom visits my room throughout the day to carry out her care duties. 1/9

#Photography #MECFS #pwME

A black and white photo of a flower bouquet on a record player, next to a window that illuminates natural light inside the room.

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Reposted by Niko Suvisto

Tom Kindlon @tomkindlon.bsky.social · 3d

DePaul University Research is conducting an online survey focused on PEM (Post-Exertional Malaise). Patients who experience PEM, as well as members of the general population, are invited to take part. The survey takes about 10-15 minutes to complete.

www.dsqpem2.com

#MEcfs #CFS #PwME #PEM

DSQ-PEM 2 Survey - DePaul University

www.dsqpem2.com

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Niko Suvisto @nikosuvisto.bsky.social · 4d

This week something very exciting happened… My mom came to my room to wash my windows. That’s probably one of the top three action-packed things that has happened this year.

I had to photograph it as I love documenting the ordinary.

#MECFS #Photography

A black and white photo of an older woman washing an opened window inside a bedroom. She’s facing the camera and reaching with her hand to wash the upper part of the window. Light comes through the window. Personal belongings are visible on a shelf.

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Niko Suvisto @nikosuvisto.bsky.social · 8d

Thanks! The whole weekend was nice! I got surprise flower delivery from my partner. The next day I saw my friends for the first time this year! It was a bit surreal haha. Managed to avoid severe PEM, which was surprising, but welcome lol!

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Andrew Gifford @andrewgiffordphoto.bsky.social · 21d

Self portraits are hard when ill - from my ME/CFS photo project

glass.photo/andrewgiffor...

ALT: Colour photo of white adult 40-something male sitting alone on easy chair in a cluttered home, with palid skin, nose strip, unwell eyes, vacant stare.

#DocumentaryPhotography #pwME #MECFS #LongCovid

Self portraits are hard when ill:

Andrew Gifford on Glass

glass.photo

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Reposted by Niko Suvisto

Liz Nevra A. @nlizaki.bsky.social · 11d

❤️ 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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Liz Nevra A. @nlizaki.bsky.social · 14d

Every five counts! Boosting her story via sharing also means it will reach someone who can donate, even if you can't 💙 thank you for the support!

#MutualAid #SevereMECFS #DomesticViolence #MEAction
#VerySevereME #MillionsMissing #DisabilityJustice #DisabilityJusticeForGlobalSouth

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

From Nevra's Instagram drafts:

Young heart for love
Not heartache
Dark hair for catching the wind
Not to veil the sight of a cold world
Please keep sharing!
We are looking at VERY Severe #pwME now going back to #DV or homelessness

💙gofundme.com/f/save-nevra

#VerySevereME

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Reposted by Niko Suvisto

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

From Nevra's Instagram drafts:

Young heart for love
Not heartache
Dark hair for catching the wind
Not to veil the sight of a cold world
Please keep sharing!
We are looking at VERY Severe #pwME now going back to #DV or homelessness

💙gofundme.com/f/save-nevra

#VerySevereME

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Reposted by Niko Suvisto

Patrick James Dilley @pjdlondonscot.bsky.social · 14d

If you’ve followed me long enough (apologies to those that have), you’ll know I can’t resist mundane infrastructure. Quite excited to find this cabinet-type, final distribution, electrical substation on my travels.

#photography #electricalsubstation #ruralscenes #scotland #Rattray #Blairgowrie

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Reposted by Niko Suvisto

Marc Wilson @marcwilson.co.uk · 13d

Trude Silman (b.1929), daughter of Elsa Feldmann (1899-1945). Leeds, United Kingdom. 31 March 2021.
“I haven’t any memory of saying goodbye to my parents or brother. I don’t remember whether I hugged them... All I remember is a happy childhood, then having to leave. I never saw my parents again.”

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Niko Suvisto @nikosuvisto.bsky.social · 17d

Thanks PZ! I did enjoy those things haha!

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Niko Suvisto @nikosuvisto.bsky.social · 18d

Thank you!!

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Niko Suvisto @nikosuvisto.bsky.social · 18d

Thanks Andrew! The birds seem to be avoiding me still hah. I bet they arrive again when it starts to get colder!

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Niko Suvisto @nikosuvisto.bsky.social · 18d

If you wish to donate, my Instagram fundraiser can be found here:

www.instagram.com/p/DO0NG0TCOG...

Or you can donate through their website:

www.omf.ngo?form=donatenow

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OMF Home - Open Medicine Foundation

ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.

www.omf.ngo

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Niko Suvisto @nikosuvisto.bsky.social · 18d

Every day, someone with ME has a birthday that reminds them of the life they lost to it. Because of that, I’m running a fundraiser for Open Medicine Foundation ( @openmedf.bsky.social ) on my Instagram account. They fund the essential research for this very underfunded illness. 8/9

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