Every five counts! Boosting her story via sharing also means it will reach someone who can donate, even if you can't 💙 thank you for the support! #MutualAid #SevereMECFS #DomesticViolence #MEAction #VerySevereME #MillionsMissing #DisabilityJustice #DisabilityJusticeForGlobalSouth

From Nevra's Instagram drafts: Young heart for love Not heartache Dark hair for catching the wind Not to veil the sight of a cold world Please keep sharing! We are looking at VERY Severe #pwME now going back to #DV or homelessness 💙gofundme.com/f/save-nevra #VerySevereME

If you’ve followed me long enough (apologies to those that have), you’ll know I can’t resist mundane infrastructure. Quite excited to find this cabinet-type, final distribution, electrical substation on my travels. #photography #electricalsubstation #ruralscenes #scotland #Rattray #Blairgowrie

Trude Silman (b.1929), daughter of Elsa Feldmann (1899-1945). Leeds, United Kingdom. 31 March 2021. “I haven’t any memory of saying goodbye to my parents or brother. I don’t remember whether I hugged them... All I remember is a happy childhood, then having to leave. I never saw my parents again.”

Today is my birthday, and I’m turning 34. Do I feel my age? No. The perception of age vanished at some point while I became chronically ill. Still, there are fleeting moments when I’m reminded of it. 1/9 #MECFS #pwME #Photography @openmedf.bsky.social

Day 1,269 draws to a close . Getting to the stage now of, ‘I’ve started so I’ll finish’. Not sure I’d know what to do with a holiday even if I had one, to be perfectly honest. . . #carers #careathome #elderly #SeeItThrough #WhatCanYouDoItsYourMum

The last rays of summer sun have now left my bedroom. It’s funny how aware of these things you become when trapped inside one room. It will be a while before I can see that evening light casting dancing shadows on the wardrobe doors again. 1/8 #MECFS #pwME #Photography

Vielä ehditte mukaan pelastamaan Suomen Covid -yhdistystä. Huomenna kokous, jossa keskustellaan jatkamisen edellytyksistä.

www.instagram.com/p/DOYrWoriJz... 🌺 Nevra’s 30th Birthday Raffle 🌺 www.gofundme.com/f/save-nevra #MutualAid #pwME #SevereMECFS #SevereME #DomesticViolence #Birthday #MillionsMissing #SolarReturn

The 6th September was Nevra’s 30th birthday, which also marked her 24th year of living with with M.E. & 7th year of living with Severe M.E. She didn’t plan to spend her 30th birthday like this, going into an even more severe state of M.E. She thought she would be “better by now & pain-free”.

#smalltowninertia2 I wish photographers valued their life experience as much as manufacturers of their tools. The lives lived inform what to do with the tool. ALT for context

Karachi is flooded again. If Nevra is taken back home: ❌ She loses phone access ❌ Trapped again in DV ❌ No IV fluids or care We urgently need: 1️⃣ Donations for 2–3 months of care/safety ❤️ PayPal.com/paypalme/SaveLizNevra 💙 GoFundMe.com/f/save-nevra #MutualAid #pwME #SevereME #DomesticViolence

A bit of the grass is greener effect but ME/CFS can really make you realise how much you enjoyed things that at the time you may have seen more as boring or a chore. Like I miss cooking so much I wish I could cook. I wanna try new recipes and always taste different stuff.

Photo from a while ago - Kerala, India We'd pootled around on a 'houseboat' on lake Vembanad for a couple of lazy days. The crew clearly got hammered on guests' booze most nights and the bottles and all rubbish was simply flung into the lake the morning after. #Photography

Ancient Light by Melanie King is a series of analogue photographs taken in dark-sky areas, capturing light that's travelled millions of years before reaching the photosensitive film. Full interview & details of her zine personalwork.online #blackandwhitephoto #photography #zine #alternativephoto

Proud to have signed the International Declaration in Support of Research and Drug Development for ME/CFS and Long COVID #MECFS #pwME #MyalgicEncephalomyelitis #LongCovid declaration.mecfs-research.org/de/declaration

Light and dark; two things that co-exist in our lives. It’s easy to look at the dark parts and think that they are the ones that weave themselves tighter into the canvas. The light always reveals what is hidden, but we need the dark to give us the shapes and forms against the light. 1/2

Suomen Covid -yhdistys kaipaa lisää ihmisiä mukaan toimintaan! Yhdistys tekee tärkeää työtä long covid - ja rokotehaittapotilaiden tukemisessa ja tiedon välittämisessä, mutta nyt tarvitaan lisää tekijöitä, jotta toiminta voi jatkua. Lue lisää tiedotteesta!

Urgent 🚨 Please boost! 200 GBP left to raise rent, or we are looking at VERY Severe #pwME now going back to DV of homelessness - Iman 💙 PayPal.com/paypalme/Sav... 💙gofundme.com/f/save-nevra ^Her story #mutualaid #SevereME #DomesticViolence #meaction #PhysicalAbuse

Thank you all for sharing and caring as you do! Nevra's friends, chosen family, and partner can breathe better thanks to your constant support and sharing links and donations! Thank you for making the world feel beautiful -Iman 🫶🏾 💙 & Nevra's partner, whom I couldn't have done this without. #pwME

My mom is 80 and ill and told me she believes they'll find a cure for #MyalgicEncephalomyelitis while I'm still young enough to benefit from it. It's lovely to think so. But part of me thinks she wants to be able to die knowing I'll be okay. Meanwhile, my drs sit there, slack-jawed.

LIVES WE CANNOT LIVE: Oxo Tower Gallery, 24-28th Sept. Everyone I photographed talked about the devastating impact that #MECFS has on their lives. I've been trying to show what they lost. #millionsmissing #documentaryphotography #PwME

Even good news can be exhausting when you’re chronically ill, a mix of joy and grief. My brother is getting married! I’m so pleased! And so, so sad that I will miss being a part of it. And unless they visit me across the country, I won’t meet his wife and step sons. The grief is ongoing.

Urgent 🚨 Please boost! 400 pounds left to meet rent, or we are looking at VERY severe #pwME now going back to DV or homelessness. - Iman Links below ❤️Paypal PayPal.com/paypalme/SaveLizNevra ❤️GoFundMe GoFundMe.com/f/save-nevra Her story^ #MutualAid #pwME #SevereMECFS #SevereME #DomesticViolence

I can’t wait to be on the other side of this welfare crap. It’s taking way too much of my thoughts and energy. It’s like being attacked and you have to constantly defend yourself. I wish more people knew how hard the fight for your own rights is. People think the system is there to catch them.

from the GFM “She used her language skills to translate the award-winning documentary Unrest into several languages to help spread awareness of ME/CFS.” Unrest has helped so many people Liz needs our help now 💛 #MECFS #MyalgicE #EDS

Part 1. Iman posting for Nevra. CONTINUED. ⚠️ If Nevra is taken back home: ❌ She loses phone access ❌ Trapped again in DV ❌ No IV fluids or care We urgently need donations for 2–3 months of care/safety #MutualAid #pwME #SevereMECFS #SevereME #DomesticViolence

Sharing a fundraiser for a member of our community! #pwME #MyalgicEncephalomyelitis #MECFS See our policy here: docs.google.com/document/d/1...

OMG; Dr David Strain, expert on everything medical so long as it gets him in front of a microphone. Giving it large on diabetes BBC Radio 4 Today (pre 7:00 BST this am). Strain took Maeve off the list for admission under specialist CFS service and advised eating disorder ward "7-10 days of NG" feed

Iman here 💜 URGENT: Our friend Nevra is paralyzed with very severe ME/CFS in Pakistan & at risk of being forced back into DV. Needs 2–3 months of care + a local ally to get her to the ER. This is life or d*ath. 🙏🏿 Donate/share: paypal.me/SaveLizNevra & gofundme.com/f/save-nevra #SevereME #MutualAid

For 3 years, I’ve been documenting the hidden stories of #PwME these images were from the very start of the project #documentaryphotography #widelux #ilfordhp5 #blackandwhite

I’ve not been doing that great this summer. In all honesty, these past years have been extremely hard, and my body has given up on me. In the end, I’m just grateful I’m still here to experience life. 1/8 #MECFS #pwME #Photography #SelfDocumentary

❤️‍🩹 VERY behind in rent donations! I need £940.35 aka $1,276.72 USD due Sept. 1: www.paypal.com/paypalme/Sav... 🚨 Plus £407.39 aka $541.57 USD for food, IV fluids, caregiver: www.gofundme.com/f/save-nevra And £785.46 aka $1,044.66 USD for an apartment #HousingFund #MutualAid #SevereME #EDS

#smalltowninertia2 Hit the ALT for the full text. Staci's main message was dead serious & dead simple "Tell your family you love them because none of us know if we'll even be here tomorrow."

“One of the things I had to accept was, after a whole lifetime of problem solving, I couldn’t solve this.” Galen Warden shares what it’s like to care for a loved one with severe ME/CFS. ➡️ bit.ly/3WE48YJ #MECFS #Caregivers #ChronicIllness

Mount Sinai Creates First Manual for Treating Infection-Associated Chronic Illness for Clinicians Brilliant work - huge thanks to all involved 👏🏽👏🏽👏🏽 www.mountsinai.org/about/newsro...

After 3 years photographing 50 people with #MECFS, I’ve learnt more than in the 40+ years since my own diagnosis. #LivesWeCannotLive #PwME

1/2 @taliasmith2021.bsky.social and I spoke this week about #ComplexChronicIllness. I'm so honored and still touched. 2,791 views already. Pls share & watch! Thank you ♥️ #FQAD #MEcfs #LongCovid #LongLyme #MCAS #POTS #SmallFiber #CCI #EDS #LongList #MedicalScandal www.youtube.com/live/L1dwxz3...

Lives We Cannot Live: "This room is my prison. M.E is like living with an abusive partner, you never know when you’ll be punished and their controlling rules change day by day." Susie, Lincolnshire. #pwme #MECFS #DocumentaryPhotography #VisualStorytelling #LongTermProject #SocialDocumentary

1) In a new pre-print, the lab of Bhupesh Prusty reports that antibodies (IgG) from ME/CFS patients cause mitochondrial fragmentation in endothelial cells. This was not seen in antibodies from MS patients or healthy controls.

I'm living with very severe ME/CFS and completely bedbound. I rely entirely on support from others to meet my basic needs and stay alive. I have a new ko-fi goal! I was recently vetted by @thedasp.bsky.social. CA and Ven: kookysnell ko-fi.com/moriende paypal.me/belzomalsh

Lives We Cannot Live is a 3-year project photographing people with #MECFS an incurable & debilitating illness. #LivesWeCannotLive #PwME #millionsmissing Info on exhibition and book tinyurl.com/58khuv8z

POV: You are bedbound and need a wash. I haven’t had a shower yet this year, which feels a bit surreal, if I’m being honest. I could do it, but it just isn’t worth suffering so much, as it would trigger a huge PEM (post-exertional malaise). 1/2 #MECFS #Photography #SelfDocumentary

If you read one thing for #SevereMEAwarenessDay, let it be this. I have experienced “very severe” only in crashes, for brief periods. But that’s enough to know it is hell. And this — the words and images — describe it perfectly. Thank you, @nikosuvisto.bsky.social #SevereME #MECFS

Today is #SevereMEDay Our thoughts are with those stricken by the severest form of the neuro-immune disease #MECFS It is an endless physical torture with the added distress of being left without medical care and the stigma that aggravates the dire situation.

From David Tuller @davetuller1.bsky.social DecodeME pre-print reported eight "genetic signals" involving immune function and the nervous system in people with ME/CFS. Many viewed the findings as of potential significance. One person did not. virology.ws/2025/08/07/t... #MEcfs #PwME

For everyone, please listen, learn, share, give....whatever you can do to make a difference in the lives of people with myalgic encephalomyelitis. We are reposting/sharing all day. Our Severe ME Artists Project 2025 debuts in an hour! Tag us and use #SevereMEDay #UnitedForME.

Today is #SevereMEDay - a day we come together to especially take time to honor the 25 percent living with the most severe form of this disease and remember those who have died from ME. Myalgic encephalomyelitis is a complex chronic disease that presents with symptoms in multiple body systems.

”I’m just grateful we don’t have that answer.“ made me cry. I see myself in your story, Niko. It pains me that you too have experienced the dark cloud of ME. Thank you for telling your story and sharing it with the world so people can gain empathy with a situation they often don’t understand.

I was asked about my opinion on this recent study into #MECFS and I wanted to share here as well. First and foremost, sincere congratulations to the research team for some stellar work. I will never stop cheering for groups that are working to uncover the biological 1/