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nikosuvisto.com
Niko Suvisto
@nikosuvisto.com
990 followers 560 following 890 posts
Life on hold by severe #MECFS, currently 99% bedbound 🛌

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

📍Finland

https://nikosuvisto.com/
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nikosuvisto.com
Niko Suvisto @nikosuvisto.com · Nov 18
I have made myself a website! To showcase my photography portfolio, which so far consists of my most meaningful ongoing project, “Enduring: Life with Severe ME/CFS”. The site also features my short biography. I kept the pages simple. 1/5

nikosuvisto.com

#MECFS #pwME #Photography
Niko Suvisto
I’m Niko Suvisto, a photographer from Lahti, Finland. I document my life as someone who is 99% bedbound with severe ME/CFS.
nikosuvisto.com
Reposted by Niko Suvisto
anilvanderzee.bsky.social
2025 edition.

It never gets old...

#pwme #myalgicE #millionsmissing #millionsmissing #severeME
December 23, 2025 at 8:45 PM
Reposted by Niko Suvisto
itsmepz.bsky.social
There's some "disruption" over on twitter about this.

My take:

1. I understand why people resort to these protocols

2. I don't doubt some #pwME have responded well. I also know #pwME have had significant setbacks...

#MyalgicEncephalomyelitis
#MillionsMissing
#GreatestMEdicalScandal
viralpersistence.bsky.social Unknown Etiology @viralpersistence.bsky.social · 21d
I read the part of the born free document titled “anxiety, isolation and phobia“ and can confirm that the reddit poster isn’t misrepresenting this section by calling it brain retraining. #mecfs #LongCovid
December 21, 2025 at 3:23 AM
Reposted by Niko Suvisto
mecfsskeptic.bsky.social
7) As might be expected from post-exertional malaise, exercise programmes are often followed by reports of deterioration. [...] People with ME/CFS will naturally tend do as much as their illness will allow without provoking post-exertional malaise...
December 15, 2025 at 8:47 AM
nikosuvisto.com
I was featured in a news story about my situation with the ongoing class action complaint against the state of Finland. Leena Marjamäki, the person responsible for the complaint, was also interviewed. A big thank you to her for doing the hard work!

The story also includes my photographs.

1/2
Niko, 34, on elänyt sängyssä vuosia – Nyt mitta tuli täyteen
Niko Suvisto, 34, ei jaksa edes seistä, mutta hänen on jaksettava haastaa Suomen valtio.
www.iltalehti.fi
December 15, 2025 at 4:05 PM
Reposted by Niko Suvisto
nlizaki.bsky.social
🚨 I have 18 days before December rent is due. We have only raised £659 and need a total of £1683 ($2246)- we need £1024 more to prevent me from being homeless.

This is an emergency. Please engage with this post! 🚨

❤️ Rent PayPal: www.paypal.com/paypalme/Sav...

💙 GFM: www.gofundme.com/f/save-nevra
Pay Adrian Bamforth using PayPal.Me
Go to paypal.me/SaveLizNevra and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.
www.paypal.com
December 14, 2025 at 8:15 PM
nikosuvisto.com
My room was originally my parents, so it had a lot of stuff that wasn’t mine and still does. We finally got rid of a huge linen closet and replaced it with a bookshelf. My photo books were all just piled up on the sideboard. Now everything has a place and it’s so much nicer to look at!

#MECFS
A black and white photo of a man holding a tilted closet. Another person is crouched next to him and holding onto the closet as well. The setting is a bedroom, and in the background personal belongings are visible. A black and white photo of a tall bookshelf full of books in a bedroom corner. Piled stools are in front of the shelf. A mirror, artworks and personal belongings hang on the walls.
December 14, 2025 at 8:06 AM
nikosuvisto.com
Photo from November 2025.

I was able to keep my functioning more stable during the last month, which resulted in more photographs, probably more than any other month this year.

#MECFS #pwME #Photography
A black and white photo of a man’s hand, taken from his point of view, reaching towards a sun shining through a faraway window, seen through a doorway.
December 13, 2025 at 8:11 AM
Reposted by Niko Suvisto
riemerville.bsky.social
Sadly, ME and Long Covid have taken another bright light.

Megan was creative, spunky, intelligent, kind, and beautiful. In the end, she was barely able to exist because of severe ME and Long Covid.

Please don’t let anyone convince you that viruses are harmless

#RIPMegan🕊️
Two women by Megan Pendleton Orange cat, w a wreath of flowers beautiful furry cat by megan pendleton frontier older man by megan Pendleton
December 12, 2025 at 6:32 PM
Reposted by Niko Suvisto
kaisasaurio.bsky.social
Long covid on lapsilla yleisempi kuin astma. Oireet tulkitaan usein virheellisesti psykosomaattisiksi.

jamanetwork.com/journals/jam...
Long COVID happens when a child continues to have symptoms ≥3 months after having a COVID-19 infection. Sometimes symptoms change, or symptoms may reappear after feeling better. Signs and symptoms of long COVID are variable in children of different ages. Infants and toddlers (0–2 y) Trouble sleeping Poor appetite Stuffy nose Dry or wet cough Preschool-aged children (3–5 y) Daytime tiredness or sleepiness Low energy Dry cough School-aged children (6–11 y) Trouble with memory or focusing Feeling lightheaded or dizzy Back or neck pain Headaches Trouble sleeping Stomach pain Nausea or vomiting Fear of specific things Refusing to go to school Itchy skin or rash Adolescents (12–17 y) Trouble with memory or focusing Feeling lightheaded or dizzy Back or neck pain Headaches Change or loss in smell or taste Body, muscle, or joint pain Daytime tiredness or sleepiness Low energy Tired after walking There is no cure for long COVID, but physicians may recommend medicine to help with some symptoms and guidance on avoiding symptom flares.
December 12, 2025 at 11:29 AM
nikosuvisto.com
This is the first time someone has featured my work and interviewed me! I share my experience living with severe ME while documenting this current life.

PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.

#MECFS #pwME #Photography
Niko Suvisto on photography as survival through ME/CFS
Niko Suvisto on photography as survival through ME/CFS
www.pcac.ngo
December 12, 2025 at 7:46 AM
nikosuvisto.com
A friend of mine sent me these lovely flowers.

#Photography
A black and white photo of a flower bouquet in a vase on top of a sideboard. A table lamp is the only light source. There is a candle, cards, a glass bird, a clock radio, and a vase on the sideboard as well. An artwork hangs on the wall behind them.
December 11, 2025 at 5:49 PM
Reposted by Niko Suvisto
anilvanderzee.bsky.social
A blog about sex & #severeME or a lack thereof:

"It is now almost 13 years since I last had sex. It feels unreal that it has been that long. I became ill at 28, right in the prime of my life. I'm 47 now and I feel like I am missing out on the most sexually active years." anilvanderzee.com/fuck-m-e/
FUCK M.E. - Anil van der Zee
M.E. SAYS NO It is now almost 13 years since I last had sex. It feels unreal that it has been that long. I became ill at 28, right in the prime of my life. I am 47 now, and I feel like I am missing ou...
anilvanderzee.com
December 9, 2025 at 5:37 PM
Reposted by Niko Suvisto
kaisasaurio.bsky.social
Näin opetetaan lääkäreitä kaasuvalottamaan potilaita sairauksista, joiden biologisista mekanismeista on runsaasti näyttöä. Ja "biopsykososiaalisuudesta" (tarkoittaa toiminnallista häiriötä eli psykosomaattista oireilua) taas ei ole mitään uskottavaa tutkimusta.

www.laakarilehti.fi/tieteessa/ka...
December 7, 2025 at 4:31 PM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Selling some bikes and gear - DM me if need anything (Bristol)

10 speed road/gravel, posh drivetrain, wheels, carbon forks, Berthoud saddle
10 speed fast tourer, really posh 700c rim wheels, triple Ultegra, 631 Claud Butler Dalesman frame
Medium sized 853 disc brake Rock Lobster, complete
December 6, 2025 at 3:56 PM
nikosuvisto.com
Today is Finland’s Independence Day. I usually post my photograph of our flag, but this time I want to talk about something else. Some of you know that I’ve participated in a class-action complaint against the state of Finland. 1/10

#MECFS #pwME #Photography #Finland
A black and white photograph of a hand grabbing a striped duvet.
December 6, 2025 at 12:21 PM
nikosuvisto.com
I have some exciting news! Two weeks ago, on the 16th of November, my partner and I got engaged! 1/8
A black and white photo of a man, Niko, wearing a suit, a button-down collared shirt, and a tie. He has a signet-style ring on his left hand ring finger, and he holds a ring with a tourmaline stone and diamonds between his thumb and index finger. He has a watch on his wrist.
November 30, 2025 at 12:26 PM
Reposted by Niko Suvisto
openmedf.bsky.social
💙 ONLY 4 DAYS LEFT of Triple Giving November! Donate now for a 3x match: ow.ly/6vpR50XztJr

ICYMI: In this interview, Dr. Jonas Bergquist and Dr. Alain Moreau talk about their main ideas behind #MECFS. Watch the interview 👉 ow.ly/U4cg50XztJq
On the left is Dr. Moreau smiling and pointing to a colorful scientific poster filled with charts and text. On the right is Dr. Bergquist wearing a white lab coat and blue shirt. In the center overlaid text reads INTERVIEW.
November 29, 2025 at 4:32 PM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
ME/CFS made me unemployable, given its impacts.

So I started a business, ran it for 10+ years. I Worked flexibly and part time, took time off when had to - many weeks/months.

As a result, I have no pension, as I was always in survival mode health-wise and financially within the business.
November 28, 2025 at 12:56 PM
Reposted by Niko Suvisto
andrewgiffordphoto.bsky.social
Photo from a while ago: Ho Chi Minh City, Vietnam

"For the future of our children" (I think). I'd love to know what this scene is about.

#Photography
Colour photo of an adult 40-something male hand painting a slogan onto the drab grey wall of a three storey residential building. He's on a green step ladder, painting with green paint. Two friends or colleagues watch on, one seated on the ground onestanding, waiting to take a photo. To their right is the blue awning and blue plastic chairs of a cafe/bar. To their left is an open door and what looks like a bicycle repair mechanics workspace, fur to a few used wheel rims leaning against the wall. The scene feels staged, as if a theater set. Two trees lean in from either side, helping frame the careful brushwork of the man's lettering.
November 26, 2025 at 11:21 AM
Reposted by Niko Suvisto
mredthompson.bsky.social
Quest Prints are online now!

Thanks to everyone who nabbed some prints so far!

edwardthompson.co.uk/Print-Sales-1

The sales will go into further Questing and eventually I'll have enough to make my next photo book!
November 25, 2025 at 11:34 AM
Reposted by Niko Suvisto
openmedf.bsky.social
⏳There’s only ONE WEEK LEFT to triple your impact. Every dollar you donate to OMF will be TRIPLED—up to $1 million—through December 2, 2025!

Act now before the match runs out! Donate hope 👉 www.omf.ngo?form=donate-....
OMF Triple Giving November graphic with the message “Time is running out—one week left” above a teal twin‑bell alarm clock.
November 25, 2025 at 7:19 PM
Reposted by Niko Suvisto
oppklipt.bsky.social
I got a digital letter from the welfare office three minutes ago and my heart rate went up and the adrenaline surge made me shake.

I’m pretty sure going through a welfare battle over time has given me a form of PTSD.
November 24, 2025 at 10:31 AM
Reposted by Niko Suvisto
openmedf.bsky.social
“Genetics pioneer Ron Davis says he’s hopeful that revelations from his and other scientists’ research on myalgic encephalomyelitis, or ME/CFS, will move treatments beyond trial-and-error solutions that manage symptoms to instead address the root cause.”

👉 ow.ly/igzM50XwzH2.
The image shows Ron Davis with white hair and a beard, wearing glasses and a brown jacket. In front, there’s an article-style graphic titled Chipping Away at the Mysteries of ME/CFS by Rachel Tompa, with a note that he has spent 12 years focused on the disease affecting his son.
November 24, 2025 at 3:53 PM
Reposted by Niko Suvisto
swastrosarah.bsky.social
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Questionnaire | page 1
www.soscisurvey.de
November 22, 2025 at 8:36 AM