Niko Suvisto
@nikosuvisto.com
Life on hold by severe #MECFS, currently 99% bedbound 🛌
Documenting my life like it is now, advocacy through photography 📷
📍Finland
https://nikosuvisto.com/
Documenting my life like it is now, advocacy through photography 📷
📍Finland
https://nikosuvisto.com/
Pinned
Niko Suvisto
@nikosuvisto.com
· Nov 18
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
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
nikosuvisto.com
#MECFS #pwME #Photography
Reposted by Niko Suvisto
December 23, 2025 at 8:45 PM
Reposted by Niko Suvisto
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
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
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
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
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
Reposted by Niko Suvisto
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
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...
It’s of course in Finnish, but browsers should be able to translate it for those who are interested enough! 2/2
December 15, 2025 at 4:05 PM
It’s of course in Finnish, but browsers should be able to translate it for those who are interested enough! 2/2
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
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
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
The story also includes my photographs.
1/2
Reposted by Niko Suvisto
🚨 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
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
🚨 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
This is an emergency. Please engage with this post! 🚨
❤️ Rent PayPal: www.paypal.com/paypalme/Sav...
💙 GFM: www.gofundme.com/f/save-nevra
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
#MECFS
December 14, 2025 at 8:06 AM
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
#MECFS
Thanks for always supporting me!
December 13, 2025 at 3:24 PM
Thanks for always supporting me!
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
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
December 13, 2025 at 8:11 AM
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
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
Reposted by Niko Suvisto
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🕊️
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🕊️
December 12, 2025 at 6:32 PM
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🕊️
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🕊️
Reposted by Niko Suvisto
Long covid on lapsilla yleisempi kuin astma. Oireet tulkitaan usein virheellisesti psykosomaattisiksi.
jamanetwork.com/journals/jam...
jamanetwork.com/journals/jam...
December 12, 2025 at 11:29 AM
Long covid on lapsilla yleisempi kuin astma. Oireet tulkitaan usein virheellisesti psykosomaattisiksi.
jamanetwork.com/journals/jam...
jamanetwork.com/journals/jam...
Happy birthday! Sausage roll sounds great!
December 12, 2025 at 12:02 PM
Happy birthday! Sausage roll sounds great!
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
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
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
PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.
#MECFS #pwME #Photography
December 11, 2025 at 5:49 PM
Reposted by Niko Suvisto
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/
"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
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/
"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/
Reposted by Niko Suvisto
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...
www.laakarilehti.fi/tieteessa/ka...
December 7, 2025 at 4:31 PM
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...
www.laakarilehti.fi/tieteessa/ka...
Reposted by Niko Suvisto
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
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
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
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
Reposted by Niko Suvisto
Saw something the other day asking why we can’t promote women as role models for young men. Such a good point!
My main male influence growing up was an appalling role model.
My mum and sisters were and are amazing role-models for me, as were many female teachers, academics, colleagues & friends.
My main male influence growing up was an appalling role model.
My mum and sisters were and are amazing role-models for me, as were many female teachers, academics, colleagues & friends.
December 6, 2025 at 3:35 PM
Saw something the other day asking why we can’t promote women as role models for young men. Such a good point!
My main male influence growing up was an appalling role model.
My mum and sisters were and are amazing role-models for me, as were many female teachers, academics, colleagues & friends.
My main male influence growing up was an appalling role model.
My mum and sisters were and are amazing role-models for me, as were many female teachers, academics, colleagues & friends.
Thanks! The heavy lifting was done by others on this matter! Which I’m very thankful of.
December 6, 2025 at 4:03 PM
Thanks! The heavy lifting was done by others on this matter! Which I’m very thankful of.
We’ll continue the fight, as always. Happy Independence Day, especially to those who fight for our rights ✊🏻 10/10
December 6, 2025 at 12:21 PM
We’ll continue the fight, as always. Happy Independence Day, especially to those who fight for our rights ✊🏻 10/10
I’d love to contribute to our society, and I did until my body broke down, a sacrifice not worth it. I’d like to just celebrate this day, at least by reminiscing about everything good, but I just can’t do it. Something deep down has been shattered and it can’t be fixed anymore. 9/10
December 6, 2025 at 12:21 PM
I’d love to contribute to our society, and I did until my body broke down, a sacrifice not worth it. I’d like to just celebrate this day, at least by reminiscing about everything good, but I just can’t do it. Something deep down has been shattered and it can’t be fixed anymore. 9/10
This matter makes me incredibly sad on a day like this. I have always loved this country. I can’t even go outside anymore to see the beauty of our nature, to swim in one of the thousand lakes or to experience the four different seasons. 8/10
December 6, 2025 at 12:21 PM
This matter makes me incredibly sad on a day like this. I have always loved this country. I can’t even go outside anymore to see the beauty of our nature, to swim in one of the thousand lakes or to experience the four different seasons. 8/10
And it’s not about what you contributed, as our rights are written in the law, and belong to everyone. Forget the law too, it’s the morally right thing to do to take care of the disabled and ill. What are we if we don’t take care of the most vulnerable? 7/10
December 6, 2025 at 12:21 PM
And it’s not about what you contributed, as our rights are written in the law, and belong to everyone. Forget the law too, it’s the morally right thing to do to take care of the disabled and ill. What are we if we don’t take care of the most vulnerable? 7/10
There is no single authority that takes responsibility. We have done our part to contribute to this society: worked and studied, paid taxes and pensions, served in the mandatory military service, and so on. 6/10
December 6, 2025 at 12:21 PM
There is no single authority that takes responsibility. We have done our part to contribute to this society: worked and studied, paid taxes and pensions, served in the mandatory military service, and so on. 6/10
No one says “ok, we need to change this. We need to do better”. No and no. These people not only deny it, but they also actively speak against us, even blame us, the most vulnerable, in the media. That’s disgusting and hurtful. 5/10
December 6, 2025 at 12:21 PM
No one says “ok, we need to change this. We need to do better”. No and no. These people not only deny it, but they also actively speak against us, even blame us, the most vulnerable, in the media. That’s disgusting and hurtful. 5/10