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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/

1082 Posts1063 Follower607 Folgt
Oppklipt@oppklipt.bsky.social · 2h ago

@nikosuvisto.com You popped up at the Norwegian ”Fokus på ME“ page on FB! “Niko is a photographer living with severe #MECFS. He has been largely bedridden since 2022 and is too ill to photograph other people, so he turned the camera on himself.“ I’m so happy to see your work reaching Norway 🇳🇴

Screenshot of “Fokus på ME“ on Facebook. Links to Niko’s photo project and pictures he has taken in black and white.
Adam@abrokenbattery.bsky.social · 2d ago

It’s Severe ME Awareness Week. Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.

Tom Kindlon@tomkindlon.bsky.social · 3d ago

The Biopsychosocial Model by @longcovidadvoc.com www.longcovidadvoc.com/post/bps From Science for ME weekly update: A thorough & critical look at the origin of the biopsychosocial model & its devastating consequences. The article has an excellent visual summary of its key points #mecfs #longcovid

101: 03. The Biopsychosocial Model

To clearly name the problem: The term is accepted in medicine as a common-sense position that on the surface makes a great deal of sense. Yet, there is often a hidden psychosomatic interpretation that...

longcovidadvoc.com

Katy B@katybrc.bsky.social · 3d ago

#ME is a demolition ball straight through the lives of every #pwME, destroying every part of their existence #pwME are demonstrating their resilience in the face of this whenever they share on social media Governments & HCPs MUST radically change how #ME is understood & treated

FunkisHen@funkishen.bsky.social · 3d ago

So funny how lock downs was the worst thing ever, infringed on people's human rights, made people "go mad" etc, but then when someone is disabled and can't leave their home they're lazy scroungers who should go to work, like we chose this.

Tom Kindlon@tomkindlon.bsky.social · 3d ago

A chronic fatigue [syndrome] sufferer has released a charity anthology to help raise money [for Invest in ME Research] and awareness of her condition Read more: www.sunderlandecho.com/news/people/... #mecfs #pwme @investinmeresearch.bsky.social #cfs

Sunderland chronic fatigue sufferer publishes charity anthology

A chronic fatigue sufferer from Sunderland has released a charity anthology to help raise money and awareness of a debilitating condition.

sunderlandecho.com

FunkisHen@funkishen.bsky.social · 3d ago

Please read this. It's a reality many are going through. And we who have family who care for us are the lucky ones. #PwME #SevereME #VerySevereME #NEISvoid

Niko Suvisto@nikosuvisto.com · 3d ago

I hope it can shine some light on how serious this illness is, what we have to go through because of the lack of care, and the risks we need to take in order to survive. You can read the full text and view all the images by visiting the blog on my website. 5/5 nikosuvisto.com/this-is-how-...

valebodi.bsky.social@valebodi.bsky.social · 4d ago

‘Living’ la vida hypoxica 24/7 365 #ME/CFS #pwME #ICD-10G93.3 #ICD-10G93.32 #ICD-118E49 IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR DYSFUNCTION IN LONG COVID AND ME/CFS Anouk Slaghekke et al. Page 12 www.amsterdamumc.org/download/ams...

Slide from Dutch researcher Anouk Slaghekke et al. IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR DYSFUNCTION IN LONG COVID AND ME/CFS lack of supply: insufficient 0, & nutrient supply lack of clearance: built-up of waste-products lack of supply: insufficient 0, & nutrient supply lack of clearance: built-up of waste-products
valebodi.bsky.social@valebodi.bsky.social · 4d ago

Update from Dutch researcher Anouk Slaghekke in the AMS 9th annual research meeting abstract book (p. 12). This small study suggests that in #pwME and post CoV ME, the capillaries in the muscles do not deliver oxygen efficiently, even though heart and lung function are normal. 1

Slide from from Dutch researcher Anouk Slaghekke in the AMS 9th annual research meeting abstract book (p. 12). This study suggests that in #pwME and #LongCovid (the subgroup that develops post COVID-19 ME) the capillaries in muscles do not deliver oxygen efficiently, even though heart and lung function are normal.
Adam@abrokenbattery.bsky.social · 5d ago

“Very ill person lives here. Please do not knock.” Rosalind Amor has had #ME since the age of 8. Aged 25, she could not tolerate much light or noise, could not get out of bed, was partly fed by tube and could only speak in a whisper. (Clip from 2017.) #MECFS

Adam@abrokenbattery.bsky.social · 6d ago

"This is not rare. This is one of life's worst diseases." Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)

Niko Suvisto@nikosuvisto.com · 6d ago

Part of my morning routine is to drink a glass of water with supplements. Yesterday, I noticed how the light glimmered in the water and reflected off the spoon. The title of this new panoramic project is ‘The Light Only Passes By’, and I chose it for several reasons. 1/3 #MECFS #Photography

A black-and-white panoramic close-up photograph of a glass of water, with supplements and a spoon in it, on top of a chair.
Anna - Please boost pinned tweet.🙏@halcionandon.bsky.social · 7d ago

It’s #DisabilityPrideMonth Didn’t know! Help me escape abusers. Declining fast🪦 $250wk #DSP rent neg- room, land, cabin SAFETY in #Melbourne🇦🇺 💸Fund: chuffed.org/project/1619... ☕️BMaC: buymeacoffee.com/Halcionandon 🎁AmazonAU: amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ ᯓ➤Beem: Halcionandon

### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!

🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!

chuffed.org

Danielle Beckman@daniellebeckman.bsky.social · last wk.

One more nail in the coffin of the "it's just deconditioning" hypothesis. 60 days of strict bed rest ≠ #LongCOVID or #MECFS. Rob's group shows that while exercise capacity may be similarly reduced, the underlying skeletal muscle biology is VERY different. Time to move beyond outdated assumptions.

Nature Communications Article in Press Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Tom Kindlon@tomkindlon.bsky.social · last wk.

Rob Wüst, corresponding author of the new paper: "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest" www.nature.com/articles/s41... Link to his full post www.linkedin.com/posts/rob-w%... #MEcfs #LongCovid

Rob Wüst • 2nd Associate Professor | Vrije Universiteit Amsterdam | Physiology | Human Movement Sciences | Metabolism | Microscopy | Chronic Diseases 4h • Edited • Connect I am incredibly proud to share our latest study, published today in Nature Communications, as a follow-up from our 2024 Nature Communications paper. https://lnkd.in/dij5WTNk People with long COVID and ME/CFS are often told that their reduced exercise capacity and muscle abnormalities are simply the result of physical inactivity or “deconditioning.” We tested this assumption by comparing patients with healthy individuals who underwent 60 days of strict bed rest. Although prolonged bed rest had major effects on physical fitness and skeletal muscle (see also: https://lnkd.in/dhx8JNQi), these changes were distinctly different from those observed in long COVID and ME/CFS. Our main conclusion: physical inactivity alone cannot explain the reduced exercise capacity and skeletal muscle abnormalities in these diseases. This is important because it shows why a simple “just exercise more” approach does not reflect the underlying biology, particularly for people who experience post-exertional malaise. We need to understand the disease-specific mechanisms and develop safe, tailored treatments.
Chris Ponting@cgatist.bsky.social · last wk.

“Physical inactivity cannot solely explain the lower exercise capacity and skeletal muscle adaptations in long COVID and ME/CFS patients” www.nature.com/articles/s41...

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications

Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...

nature.com