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
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
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.
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
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.
I’m pretty sure going through a welfare battle over time has given me a form of PTSD.
Reposted by Niko Suvisto
“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.
👉 ow.ly/igzM50XwzH2.
November 24, 2025 at 3:53 PM
“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.
👉 ow.ly/igzM50XwzH2.
Reposted by Niko Suvisto
#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...
"= 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
#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...
"= 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...
Reposted by Niko Suvisto
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 12:01 AM
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
Reposted by Niko Suvisto
I tried to make a cool reel to promote the coming photo print sale... it didn't land at all! ha!
I think maaaybe I used too much Excalibur footage.
But come on, you can never have enough Excalibur!
(such a shame the lead actor playing Arthur was so crap!)
youtube.com/shorts/xZQ5w...
I think maaaybe I used too much Excalibur footage.
But come on, you can never have enough Excalibur!
(such a shame the lead actor playing Arthur was so crap!)
youtube.com/shorts/xZQ5w...
A Photo Quest Begins.... PRINT DROP 25/11/25
YouTube video by Pictures On My Mind
youtube.com
November 21, 2025 at 5:17 PM
I tried to make a cool reel to promote the coming photo print sale... it didn't land at all! ha!
I think maaaybe I used too much Excalibur footage.
But come on, you can never have enough Excalibur!
(such a shame the lead actor playing Arthur was so crap!)
youtube.com/shorts/xZQ5w...
I think maaaybe I used too much Excalibur footage.
But come on, you can never have enough Excalibur!
(such a shame the lead actor playing Arthur was so crap!)
youtube.com/shorts/xZQ5w...
Reposted by Niko Suvisto
Small explanation : #MECFS is a severe immune damaging disease.
Your body is - in severe cases like Niko's - unable to fight off the smallest of disease, and only heals slowly if at all.
Alas, while medically researched and therapies existing, MECFS care is unavailable in public health.
Your body is - in severe cases like Niko's - unable to fight off the smallest of disease, and only heals slowly if at all.
Alas, while medically researched and therapies existing, MECFS care is unavailable in public health.
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
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
November 21, 2025 at 9:37 AM
Small explanation : #MECFS is a severe immune damaging disease.
Your body is - in severe cases like Niko's - unable to fight off the smallest of disease, and only heals slowly if at all.
Alas, while medically researched and therapies existing, MECFS care is unavailable in public health.
Your body is - in severe cases like Niko's - unable to fight off the smallest of disease, and only heals slowly if at all.
Alas, while medically researched and therapies existing, MECFS care is unavailable in public health.
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
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
November 18, 2025 at 6:40 PM
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
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/...
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
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/...
You even get a beautiful print in return.
Please consider supporting if you can 🙏
circa35mm.com/art-store/p/...
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
#MECFS #SevereME #pwME #Photography #SelfDocumentary
November 15, 2025 at 1:19 PM
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
#MECFS #SevereME #pwME #Photography #SelfDocumentary
Reposted by Niko Suvisto
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-...
www.pcac.ngo/blog/jeremy-...
November 13, 2025 at 8:19 AM
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-...
www.pcac.ngo/blog/jeremy-...
Reposted by Niko Suvisto
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
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
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
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
Reposted by Niko Suvisto
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
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
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
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
November 5, 2025 at 8:42 PM
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
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
Reposted by Niko Suvisto
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
Thank you so much!💙
#severeme #VerySevereME
November 5, 2025 at 1:34 AM
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
Thank you so much!💙
#severeme #VerySevereME
Reposted by Niko Suvisto
November 4, 2025 at 7:14 PM
Reposted by Niko Suvisto
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
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
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
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
Reposted by Niko Suvisto
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.
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
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.
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.
Reposted by Niko Suvisto
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
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
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
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
Reposted by Niko Suvisto
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
💙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
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
💙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
Reposted by Niko Suvisto
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
stroudtimes.com/renowned-pho...
hundredheroines.org
#Photography
Big thanks to #StroudTimes for visiting and making this fabulous film 🎞️ with #GulshanKhan
#Exhibition runs until Saturday at the museum 🏛️
#WomenInPhotography
www.youtube.com/watch?v=or63...
#Exhibition runs until Saturday at the museum 🏛️
#WomenInPhotography
www.youtube.com/watch?v=or63...
Photojournalist Gulshan Khan speaks about documenting climate change and its human impact
YouTube video by Stroud Times
www.youtube.com
October 23, 2025 at 10:54 AM
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
stroudtimes.com/renowned-pho...
hundredheroines.org
#Photography
Reposted by Niko Suvisto
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....
www.ebay.co.uk/itm/19779099....
Pardon our interruption...
www.ebay.co.uk
October 21, 2025 at 10:38 AM
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....
www.ebay.co.uk/itm/19779099....
Reposted by Niko Suvisto
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
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
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
#MECFS #pwME #Photography #SelfDocumentary
October 21, 2025 at 10:18 AM
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
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
Reposted by Niko Suvisto
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.
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.
My online exhibition, ‘Enduring’, is up on the A Quiet Storm website. 10/10
www.aquietstorm.me/enduring-by-...
www.aquietstorm.me/enduring-by-...
“Enduring” by Niko Suvisto — a quiet storm - an online gallery
View our online exhibition of a documentary-style photography series capturing life with severe ME/CFS, by photographer Niko Suvisto.
www.aquietstorm.me
October 21, 2025 at 7:35 AM
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.
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.
Reposted by Niko Suvisto
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
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
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
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
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
#MECFS #pwME #Photography #SelfDocumentary
October 21, 2025 at 7:22 AM
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
#MECFS #pwME #Photography #SelfDocumentary
Reposted by Niko Suvisto
💖 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
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
💖 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
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