iiinova — where your digital self keeps evolving

Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 13/10/2025

From my archive on this day - 13th Oct 1. 2010 - London, weaver Ptolemy Mann, from a project on London crafts 2. 2012 - Cairo, shooting a doc for Al Jazeera 3. 2023 - Lincoln, Hilary & Richard from a project on chronic illness

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Adam @abrokenbattery.bsky.social · 02/10/2025

BBC Radio Suffolk segment (13 mins) on #MECFS - @tinarodwell1.bsky.social speaks about caring for her son Angus, the daily challenges of the illness, and @jeremy-jeffs.bsky.social powerful exhibition Lives We Cannot Live which Angus took part in. youtu.be/bNw30eqfhvw?...

youtu.be

BBC Radio Suffolk - Tina Rodwell

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 21/09/2025

Clip from ITV Border News (19 Sept) about the powerful upcoming exhibition Lives We Cannot Live by Jeremy Jeffs (@jeremy-jeffs.bsky.social), shining a light on life with #MECFS. Highly recommended if you’re in London - Oxo Tower Gallery, 24–28 Sept

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Adam @abrokenbattery.bsky.social · 22/09/2025

BBC Radio Cumbria (8 mins): Fiona Sadler speaks with farmer Andrew Jackson and his wife about featuring in Lives We Cannot Live, a photo exhibition about #MECFS by Jeremy Jeffs (@jeremy-jeffs.bsky.social) - London Oxo Tower Gallery, 24–28 Sept youtu.be/ylcuLlvfubk?...

youtu.be

BBC Radio Cumbria — ME/CFS Photo Exhibition

YouTube video by Broken Battery

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Paula Smith @paulasmith.co.uk · 26/09/2025

Really beautiful, eye opening photography exhibition at the OXO Gallery, London this weekend. Bravo @jeremy-jeffs.bsky.social really well done. Go visit if you can. 👏👏👏

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John Peters @johnthejack.bsky.social · 27/09/2025

As some may have seen, I've been out of things last couple of weeks with another (another, another, etc) virus, so missed the start of this. Good luck and thanks to @jeremy-jeffs.bsky.social coinstreet.org/whats-on/liv... #MEcfs #LivesWeCannotLive

coinstreet.org

Lives We Cannot Live

This photographic project of people with ME aims to bring identity and visibility to the ME community.

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Photobook Junkies @photobookjunkies.bsky.social · 18/09/2025

We’re down to the last few signed copies of Rich Gilligan’s brilliant new photobook, The First Draft (Driftwood Editions, 2025) Pick up a copy here: www.photobookjunkies.com/product/rich... Worldwide shipping 🌎

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Bertrom. @bertrom.bsky.social · 18/09/2025

Steven Siegel. New York. 1980s. “At its best, New York street photography is an odd mélange of the familiar and the bizarre, of sunshine and shadow, of the prosaic and the painterly and is a particularly rich source of social commentary.”

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Photobook Junkies @photobookjunkies.bsky.social · 17/09/2025

The curious case of Japan’s photo pioneer who buried his legacy: 🎥 youtu.be/0NVYfTYxiMo?...

youtu.be

The curious case of Japan's photo pioneer who buried his legacy | BBC Global

YouTube video by BBC Global

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Andrew Gifford @andrewgiffordphoto.bsky.social · 17/09/2025

Self portraits are hard when ill - from my ME/CFS photo project glass.photo/andrewgiffor... ALT: Colour photo of white adult 40-something male sitting alone on easy chair in a cluttered home, with palid skin, nose strip, unwell eyes, vacant stare. #DocumentaryPhotography #pwME #MECFS #LongCovid

glass.photo

Self portraits are hard when ill:

Andrew Gifford on Glass

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Deborah Parkin @deborahparkin.bsky.social · 17/09/2025

A few cyanotype prints from my Jackdaw series. 💙 The text is explained in the ALT.

A series of cyanotype prints with Jackdaws - the first and last image are text.

The Jackdaw series was made in response to my grief for the death of my alcoholic father. The first words printed above where said by him when I first asked him to stop drinking (he had just been diagnosed with cirrhosis of the liver) and the last words where his final words as he lay dying in hospital. This series is dedicated to him and others living or suffering addiction - there is beauty if you look out of the window - it is sometimes hard to find, but it is there.

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Deborah Parkin @deborahparkin.bsky.social · 16/09/2025

Beautiful 🖤

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Tom Kindlon @tomkindlon.bsky.social · 10/09/2025

Thanks to everyone who came. I’m heading back to Dublin soon but there seems to be sufficient interest (there were five apologies) to keep going next summer when I’ll hopefully in the area again. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Photobook Junkies @photobookjunkies.bsky.social · 10/09/2025

Street Poet: The Emotional Depth Of Sabine Weiss. 🎥 youtu.be/hdC3-yCS37c?...

youtu.be

Street POET: The EMOTIONAL Depth of Sabine Weiss

YouTube video by JoelUlises

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Davenant 📸 @marcdavenant.bsky.social · 09/09/2025

The Outsiders exhibition has now been installed at The Courtyard in Hereford, it’s essentially the same version that was displayed inside the Houses of Parliament, plus the case display and the art video. It’s a great venue and well worth a visit.

Photography exhibition with a case display at the front showing two vintage cameras and in the background a series of monochrome portraits

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Damon Charles @damonmakespictures.bsky.social · 09/09/2025

I really like this image by photographer Robert Darch from his Durlescomb series. www.robertdarch.com

Two figures standing in a reed field, their faces obscured by smoke.

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Jon Pountney @jonpountney1.bsky.social · 06/09/2025

In the Valleys

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Andrew Gifford @andrewgiffordphoto.bsky.social · 06/09/2025

Ukraine, still fighting on. Maxim Dondyuk's photography is phenomenal. www.youtube.com/watch?v=8b8b... #Photography

youtube.com

Maxim Dondyuk - An artistic vision within a warring nation

YouTube video by Graeme Williams - Photographic Conversations

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Steve Fifield @stevefifield.bsky.social · 04/09/2025

#Justice4ME 🙌 has just passed halfway point on stretch target 🎉 ✅ 200 pledges, sadly most donations from people with least to spare 🙏 😢 ❌ 200 pledges from 400,000 UK #pwME = 0.05% 🤔🫤 💡Any ideas for greater reach? More Allies, Friends, Charities 🤷‍♂️? Can anyone share wider amongst own Local groups?

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 04/09/2025

I'd love some suggestions for #photographers to follow on here... mostly interested in #documentary and socially engaged work but love a great #portrait or bit of #streetphotography too. #documentaryphotography #photographersofbluesky #starterpack

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 04/09/2025

For Lives We Cannot Live I created 3 types of #collage - portraits hidden by rooms people live in, portraits hidden by photos before they were ill & portraits hidden by people's responses to #mecfs. So many meaningful lives have been disrupted. #invisibleillness #millionsmissing #pwme

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Davenant 📸 @marcdavenant.bsky.social · 03/09/2025

The photo is of Charlie and is one of the first photos I took for the Outsiders project

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Andrew Gifford @andrewgiffordphoto.bsky.social · 30/08/2025

Totally stuck - from my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of a beautiful black and silver butterfly, trapped inside a class paperweight, on a drab blue background #MECFS #pwME #LongCovid #Photography

glass.photo

Totally stuck:

Andrew Gifford on Glass

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 03/09/2025

Had a txt from a contributor asking how I dealt with seeing so much suffer & it's true that sometimes I was v shaken - drove off with camerbag in the gutter once - but mainly I was angry. What other disease affects 400,000 but is virtually invisible? #pwme #mecfs #millionsmissing #invisibleillness

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 02/09/2025

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

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Chris Ponting @cgatist.bsky.social · 01/09/2025

Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

elxw.fa.em3.oraclecloud.com

PRIME Project Manager

The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 01/09/2025

Ryan Thomas is an early career #photojournalist with a strong intererst in #protestphotography. We sat down with him and chatted about his work in the USA, France and the UK, and his #selfpublished #photobook. Read the full article on the website www.personalwork.online

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 28/08/2025

Really enjoyed interviewing inimitable portrait photographer Harry Borden for Personal Work Journal. It was a v frank and v funny chat, he shared his passion projects, state of the industry insights and some gossip! Full interview - www.personalwork.online #photography #celebrityphotographer

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 28/08/2025

From LIVES WE CANNOT LIVE showing at Oxo Tower Gallery from, 24/9/25 I asked people to respond to their photographs with written thoughts. This is from Ash, photographed in his childhood bedroom. #PwME #MECFS #invisibleillness #documentaryphotography #photography #millionsmissing #photocollage

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 27/08/2025

People without #MECFS have been asking why this project is called Lives We Cannot Live. #PwME Showing at Oxo Tower Gallery London from 24/9/25 More info mailchi.mp/16f8611232cc... #socialdocumentary #documentaryphotography #invisibleillness

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Tom Kindlon @tomkindlon.bsky.social · 25/08/2025

From ME Research UK @meresearchuk.bsky.social : ME Research UK-funded researcher Dr Jarred Younger has recorded a 15 minute explanation of deCodeME's recently published pre-print results. This covers background, method, results, and importance - tinyurl.com/5n6buzpj #MECFS #decodeME

tinyurl.com

068 - New results from a (very large) ME/CFS genetics study!

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 24/08/2025

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

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 23/08/2025

It takes nearly 6 months to arrange a shoot with Shreya. She was ill, I was ill, then I was ill again. Shreya meets me at the door in a wheel chair, tells me that today is bad, we’ll have to be quick. After the shoot I send her some prints & she writes me a short note. #mecfs #invisibleillness

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 22/08/2025

From Lives We Cannot Live - Oxo Tower Gallery from 24th Sept. Some people were so ill I could only take a few frames before it became too much for them & I had to leave. #SevereME is devastating. #LivesWeCannotLive #documentaryphotography #pwme #mecfs #fujigfx

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 18/08/2025

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

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 14/08/2025

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

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Tom Kindlon @tomkindlon.bsky.social · 14/08/2025

Summaries of presentations made at the recent Patient-Led Research Collaboration (PLRC) @patientled.bsky.social conference solvecfs.org/plrf-event-h... Prepared by Solve ME/CFS Initiative @solveme.bsky.social #LongCovid #MEcfs

PLRF Event Highlights Promising ME/CFS & Long Covid Biomedical Research Projects
July 24, 2025
8:24 pm

On July 9, the Patient-Led Research Collaborative (PLRC) hosted an online presentation by researchers funded by the inaugural Patient-led Research Fund (PLRF). Ms. Gina Assaf, one of the PLRC founders, started the afternoon by reviewing how the PLRC began and the PLRC’s overarching goals.

In April 2020, Gina explained, a group of people from countries all around the world and from diverse professional backgrounds banded together to document their experiences having Long COVID. This informal group grew into the PLRC, whose mission is to represent people with Long COVID and other infection-associated chronic conditions through research in which patients help conduct, through medical education, and through advocacy grounded in patients’ firsthand experiences. Even today, each PLRC team member is a patient with Long COVID or Long COVID–related condition.

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 14/08/2025

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

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 13/08/2025

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

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Steve Fifield @stevefifield.bsky.social · 10/08/2025

🔥 Extremely emotional & powerful “must-read” about FII / Fabricated or Induced Illness. @swastrosarah.bsky.social interview brought tears to my eyes. #ME patient FII policies need totally re-writing urgently ⬅️ www.thetimes.com/uk/healthcar... Archived: archive.is/2025.08.09-2... #pwME #pwLC #FII

thetimes.com

As my daughter died of ME, the state met in secret to blame me

Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 09/08/2025

By taking his #streetphotography inside Paul Harrison creates striking relationships between art & the real world. Full interview personalwork.online #nationalgallery #personalwork #IndiePhotoMag #photography

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 08/08/2025

#SevereME is devastating & even 40+ years after my own (mild) diagnosis I can only guess at the pain & suffering. Hilary, Cereth & Craig let me take photographs, thank you. #mecfs #SevereMEDay #severemeday2025 #LivesUnlived Info on exhibition and book tinyurl.com/58khuv8z

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valebodi.bsky.social @valebodi.bsky.social · 04/08/2025

I know, most articles use this type of unrepresentative stock photos and only CFS in the title. I guess we have to pick our battles wisely. Especially if we are pwME. @jeremy-jeffs.bsky.social has been taking really great photos of people with ME in the UK.

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Jeremy Jeffs | photography & documentary @jeremy-jeffs.bsky.social · 30/07/2025

As a passion project I run personalwork.online - sharing the #personalprojects of photographers. This week's interview is Ayesha Jones featuring Backbone her project on #scoliosis #documentaryphotography

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#MEAction Scotland @meactionscotland.bsky.social · 29/07/2025

Our response to the DHSC’s ME/CFS Delivery Plan - a plan without money, mandates or deadlines is not a plan - it is a wish‑list -@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social ow.ly/1anc50WwzAM #MyalgicEncephalomyelitis #VerySevereME #pwME #pwLC #ChronicIllnessUK #DisabilityAdvocacy

On a teal coloured background with the Royal crest in white text saying Department of Health & Social Care to top right with MEAction UK’s response to the DHSC’s ME/CFS Delivery Plan at the bottom centre. All text in white.

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