2025 edition. It never gets old... #pwme #myalgicE #millionsmissing #millionsmissing #severeME

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

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...

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

🚨 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

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

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

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🕊️

Long covid on lapsilla yleisempi kuin astma. Oireet tulkitaan usein virheellisesti psykosomaattisiksi. jamanetwork.com/journals/jam...

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

A friend of mine sent me these lovely flowers. #Photography

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/

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...

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

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.

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

I have some exciting news! Two weeks ago, on the 16th of November, my partner and I got engaged! 1/8

💙 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

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.

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

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!

⏳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-....

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.

“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.

#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...

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 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...

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.

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

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/...

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

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-...

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

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

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

🙏🙏🙏 All available as part of Christmas Charity Print fundraiser… circa35mm.com/art-store/p/...

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

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.

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

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

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

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....

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

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.

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

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

💖 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

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

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

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