People making creative projects about ME/CFS

I'm keen to discover creative projects - especially art, photos, illustrations - about ME/CFS. Here are some I've found so far. Please help me add to this list, I'd love to publish more editions!

I’m very aware that making art or a creative project may be beyond many ME/CFS sufferers - in spite of their skill and inspiration - due to the overwhelming and limiting nature of the condition. I’m currently ‘only’ a moderate (housebound) sufferer, but I’m massively grateful to those who have contributed to this post (people I happened to discover online). I’d love to hear from anyone who may like to contribute to another edition - even single pieces of art work or images are helpful.

In alphabetical order (and apologies if I accidentally misdescribe - or misgender -someone here, I’ve done my best to be accurate, but I may have missed something due to brain fog)…

Christina Baltais

Christina is a multi-disciplinary artist - photography, conceptual make-up, collage and writing - and an ME/CFS advocate from Toronto, Ontario. Her ‘Seasons of ME’ is a expressionist self-portrait photography series, viewable at:

She writes to raise awareness, and to help herself and others process the hardships that come along with this disease.

You can follow her writing via: https://themighty.com/u/christinabaltais/ and see more of her work via: https://seemeexpo.com/christina-baltais.

Juliet Chenery-Robson

Juliet is a visual artist, carer, and academic researcher based in the UK whose daughter developed ME/CFS, inspiring Juliet to make work about chronic illnesses. Over the years, Juliet has made three photographic projects about ME/CFS showing 1) where outbreaks have developed around the world, 2) environmental portraits of sufferers in their homes and, 3) dignified portraits and studies of people who suffer the condition.

You can see more of the work - three distinct projects - via her website; https://www.jcrvisualartist.com/global-portrait-of-m-e and https://www.jcrvisualartist.com/kingdoms-of-illness and https://www.jcrvisualartist.com/portraits-of-an-invisible-illness.

You can order ‘Unpredictable Patterns’, the book of Juliet’s ME/CFS work here, via Blurb. And you can order ‘A Diagnosis of Exclusion’ here similarly.

Whitney Dafoe

Whitney is a USA-based photographer whose tender, heart wrenching and award-winning images are an inspiration and testimony to the effort he endures to make such moving work while so poorly with very severe ME/CFS. He shares moving environmental-portraits and self-portraits along with the paraphernalia and living environment associated with his condition, which currently sees him bed bound.

Image source: blog post ‘Stop taking away my mind’.

You can see more of the work at; www.whitneydafoe.com/mecfs/. Whitney’s keenly observed pre-ME/CFS photos are at; www.whitneydafoe.com/photographs/. And you can follow via: @WhitneyDafoe on Bluesky.

Patricia Fortlage

Patricia is a documentary and fine art photographer based in Los Angeles, USA. For 18 years, she has been juggling two serious long-term health conditions; ME/CFS and Myasthenia Gravis, which is a rare, long-term autoimmune disorder that causes muscle weakness in the body's voluntary muscles.

Her photography series Lemonade is a mix of self and environmental portraiture and still life, embracing the beauty of classical paintings often with a theatrical and ironic twist, while upholding grace and determination in the face of such challenges.

It's worth digging into the other galleries on the website too, lots of important and beautiful work to be found! (Image goes here)

You can follow via: @patricia.fortlage on Insta and @pfortlage on Substack."

Andrew Gifford (author of this piece)

I’m an amateur photographer and ‘moderate’ ME/CFS sufferer for 15-30 years. Based in the UK, I’m using a combination of documentary, conceptual and still life approaches to convey my take on ME/CFS. The project will be donated to the Open Medicine Foundation, to support its advocacy and awareness work, to help raise funds for its pioneering medical research. The project is also open to use by UK-based ME/CFS research and advocacy organisations, to support their work locally - please just drop me a line in the comments to request files.

You can see more of the work at; https://glass.photo/andrewgifford. And you can follow via: @AndrewGiffordphotography on Bluesky and via @AndrewGiffordphotography on Mastodon or via @AndrewGiffordphotography on Vero.

Jeremy Jeffs

Jeremy is a social documentary filmmaker and photographer, and ME/CFS sufferer for 30+ years. Based in the UK, he’s photographing other ME/CFS sufferers in their homes, an important project from which a selection will be published, plus five portraits will be commissioned, by The Wellcome Foundation.

You can follow via: @magentoJJ on Twitter and via Jeremy’s website (where a flavour of the project will soon be added).

Sam Megilley

Sam Megilley is a UK-based documentary/fine art photographer, and ME/CFS sufferer for 10+ years. He makes long-term projects and 'Blue Dog' is a soon-to-be-published book of black and white images conveying his take on Chronic Fatigue Syndrome;

You can see more of the project at; https://sammegilley.com/blue-dog. You can follow him here on Substack. And his Instagram is @SamMegilley. I’ll add a link to Sam’s forthcoming book as soon as it’s available, and I’ll announced in my Notes too.

Nyx Mir

Nyx is a USA-based artist making affecting and relatable hand-drawn illustrations about the symptoms, pain, sensations and experiences encountered in their ME/CFS. The format feels (to me) like blending of medical notes and Japanese ‘Kakemono-e’ (vertical rectangular) art.

You can see more of the work at; www.illmarks.com. And you can follow via: @illmarks on Mastodon and via their Linktree: https://linktr.ee/daphnemir.

Lia Pas

Lia Pas is a Canada-based interdisciplinary creator-performer of music, text, movement and image. She’s using embroidery to make scientific art re the anatomy entailed in her ME/CFS and it's stunning. Lia’s work is graphic, scientific-feeling and yet humane, and with a tenderness and sense of drama too. Lia is also producing ambient audio that interprets the condition.

You can see more of the work at; liapas.com. And you can follow via: @LiaPas on Bluesky and via @Lia_Pas on Mastodon and here on Substack. Her audio is at: https://ko-fi.com/s/872acbb154.

Pehpunkt

Pehpunkt (the artist's alias name) is a graphic designer and artist based in Berlin. An ME/CFS sufferer for approx. 12 years, housebound for three years, sometimes bed bound. The project is a poignant and humorous series of graphic illustrations that highlight the repetitive isolating nature of the disease. I've really enjoyed looking through this whole series, that's how the work really shines!

The foundational drawings were created during 2023, while it was possible to sit at their desk for sufficient time. Figures are drawn on with pencil on paper (the favorite material), the background usually stays the same, then the elements are brought together using the computer. This also saves work and energy. The drawings are finally colourised using the computer.

You can follow along via: @pehpunkt on Bluesky and via @drehpunkt_ on Twitter.

Who else should be included in a future edition?

Please mention in the comments and I’ll check them out! I’m conscious that this initial list is of people in English-speaking nations, and I’d love to broaden it out.

How can art benefit awareness about - and funding for - ME/CFS?

Honestly? I don’t have an answer. This is all absolutely a first for me, so if you’ve any ideas, suggestions or connections, please let me know! Feel free to share meanwhile, that all helps a little, I hope!

Thanks.

Copyright of these images

All rights reserved. Any unauthorised publishing, broadcasting, public performance, copying or re-editing will constitute an infringement of copyright. If you want to use one of the images in any regard, you must first seek the permission of its owner - the original artist/photographer - please contact them directly.