Niko Suvisto
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nikosuvisto.bsky.social
Niko Suvisto
@nikosuvisto.bsky.social
980 followers 560 following 850 posts
Life on hold by severe #MECFS, currently 99% bedbound 🛌

Documenting my life like it is now, advocacy through photography 📷

📍Finland

https://www.aquietstorm.me/enduring-by-niko-suvisto
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nikosuvisto.bsky.social
Niko Suvisto @nikosuvisto.bsky.social · Apr 18
It’s been a week since the launch of our online art gallery A Quiet Storm.

Part of our launch exhibitions was my documentary-style photography series about my current life, ‘Enduring: Life with Severe ME/CFS’. 1/3

www.aquietstorm.me/enduring-by-niko-suvisto

#MECFS #pwME #Photography
A black and white photograph of a shirtless man sitting on a bed, curled up with his arms wrapped around his knees and his head down. The room has white cabinets in the background, and the setting conveys a sense of isolation.
Reposted by Niko Suvisto
circa35mm.bsky.social
For £15 you could help change the life of a child by giving them shelter, food and an education.

You even get a beautiful print in return.

Please consider supporting if you can 🙏

circa35mm.com/art-store/p/...
November 15, 2025 at 8:42 AM
nikosuvisto.bsky.social
Every morning, I wait in the darkness for my mother to open my room’s door so that we can start the daily routines.

#MECFS #SevereME #pwME #Photography #SelfDocumentary
A black and white photograph of a dark bedroom floor. The light peeks through under the closed door, lits part of a wheelchair and a cable running across the floor.
November 15, 2025 at 1:19 PM
Reposted by Niko Suvisto
abrokenbattery.bsky.social
Q&A on the Photography & Collaboration Arts Collective (PCAC) blog with photographer Jeremy Jeffs @jeremy-jeffs.bsky.social, diagnosed with ME in 1987, discussing his powerful project photographing people living with the illness.

www.pcac.ngo/blog/jeremy-...
November 13, 2025 at 8:19 AM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Gingseng, for ME/CFS or Long Covid

I got on well with this in tea form, as it didn't impact sleep iirc. No side effects. Others also report it helps with fog and capacity, a little. Any is welcome.

Any experiences to share?

Cheers, burp.

#Gingseng #MECFS #LongCovid
November 8, 2025 at 12:38 PM
Reposted by Niko Suvisto
tomkindlon.bsky.social
2nd donation ✅

David Tuller DrPH has shown he has a:

-good skill set for this type of work

-good knowledge base from following the field closely for many years

-an appetite as it can be very draining

Proponents of exercise/psychologicalisation/etc are still around

#MEcfs #LongCovid #CFS #PwME
November 5, 2025 at 8:42 PM
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
circa35mm.bsky.social
🙏🙏🙏

All available as part of Christmas Charity Print fundraiser… circa35mm.com/art-store/p/...
November 4, 2025 at 7:14 PM
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Found any beneficial teas, for ME/CFS?

I find black teas give me a headache. Green is ok, provided I've been maintaining breath holds, or headache. Chamomile to help wind down. Getting bored of mint. Enjoy Tulsi. Found gingseng helps 'liven' but I'm more after neutral/no stimulation.
October 30, 2025 at 10:42 AM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
In what order should I watch Dario Argento's fillums?

Susperia set a high bar. The Phenonemen cemented it. Tenebrae arrives shortly. I can't afford to buy them all, so have to pick the best ones and the best route through.

Ta. xx
October 30, 2025 at 10:01 AM
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Well, I didn't know about the Hundred Heroines photography museum - dedicated to women's photography - in Nailsworth, Gloucestershire.

stroudtimes.com/renowned-pho...

hundredheroines.org

#Photography
October 23, 2025 at 10:54 AM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Selling my most handsome bike as I'll likely never ride it again and DWP's pittance of welfare has me broke on top of being broken by ME/CFS

www.ebay.co.uk/itm/19779099....
Pardon our interruption...
www.ebay.co.uk
October 21, 2025 at 10:38 AM
Reposted by Niko Suvisto
itsmepz.bsky.social
I am so grateful for the honesty and vulnerability of #pwME who share their personal stories.

It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life.

#MyalgicEncephalomyelitis
#MillionsMissing
nikosuvisto.bsky.social Niko Suvisto @nikosuvisto.bsky.social · 26d
It has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10

#MECFS #pwME #Photography #SelfDocumentary
A black and white photograph of a shirtless man sitting on a bed, curled up with his arms wrapped around his knees and his head down. The room has white cabinets in the background, and the setting conveys a sense of isolation.
October 21, 2025 at 10:18 AM
Reposted by Niko Suvisto
oppklipt.bsky.social
I recommend everyone to read this online Exhibition @nikosuvisto.bsky.social has made. Both text and photographs.

If you have ME yourself, you’ll probably know exactly what he’s talking about. If you don’t, maybe you’ll get more of an understanding for ME-patients.
October 21, 2025 at 7:35 AM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Here but not here - from my ME/CFS photo project

glass.photo/andrewgiffor...

ALT: Colour photo of a caucasian adult male's head just about visible through foggy blue-grey glass, as he peers in through the murk

#DocumentaryPhotography #pwME #MECFS #LongCovid
Here but not here:
Andrew Gifford on Glass
glass.photo
September 29, 2025 at 12:56 PM
nikosuvisto.bsky.social
It has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10

#MECFS #pwME #Photography #SelfDocumentary
A black and white photograph of a shirtless man sitting on a bed, curled up with his arms wrapped around his knees and his head down. The room has white cabinets in the background, and the setting conveys a sense of isolation.
October 21, 2025 at 7:22 AM
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
minetodo.bsky.social
Stand By ME/CFS!
We are banding together globally to raise awareness, demand health equity and seek a path towards the cure for ME/CFS. Please lend your voice and become an ally today!

#StandByMEcfs #StillSickStillFighting #MEcfs #pwME
#TeachMETreatME #EndMEcfs #GlobalVoiceforME
#wishtreeforyokoono
Wish tag from virtual Wish Tree for Yoko Ono. Cynthia's wish is: Stand By ME/CFS!
October 13, 2025 at 10:51 PM
Reposted by Niko Suvisto
tomkindlon.bsky.social
Please Help David Tuller @davetuller1.bsky.social , Our Champion!

crowdfund.berkeley.edu/project/47768

From the October 2025 AMMES Newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Please Help David Tuller, Our Champion! Photo of David Tuller Last spring, David successfully raised money through Crowdrise in order to continue investigating and blogging about the PACE trial. The funds went to the School of Public Health at the University of California, Berkeley, which created a position for David to continue his investigative work. Now the funds have run out, and Tuller has to depend on the generosity of our community to continue his work.
October 11, 2025 at 12:39 AM
Reposted by Niko Suvisto
katimime.bsky.social
Hyvää tyttöjen päivää!
a hand is holding up a sign that says girls just wanna have fundamental human rights
Alt: a hand is holding up a sign that says girls just wanna have fundamental human rights
media.tenor.com
October 11, 2025 at 11:27 AM
Reposted by Niko Suvisto
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
Reposted by Niko Suvisto
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
nikosuvisto.bsky.social
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.
October 5, 2025 at 2:50 PM