Severe ME Day, August 8 2025 and and Severe ME week

#MEAction Network:
#MEAction is once again proud to bring you our Severe ME Artists Project that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! We have all the details here and we are happy to help you submit your work: https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/

This project will be an opportunity for those with severe ME to showcase their artwork, whether it be writing, photography, drawing, or any other way that illustrates their talents. Participants can also submit past artwork created before they got sick.

The Severe ME Artists Project 2025 will feature a video compilation and an online gallery of submitted work. This project will be shared with the community around Severe ME Day with the goal that people can watch the video and/or scroll through the gallery when it is best for them.

Art is foundational to activism. It provides a way to tell a story that connects us on a deeper level. We want to acknowledge the grief that happens for those unable to practice their art or have had to change their methods due to illness. We are holding space for you and keep you at the center of all we do at #MEAction, all year long.

If you would like to take a look our past Severe ME Artists Projects are available on our site. It is always very powerful.

We often get asked - how do I know if I am severe enough to participate? The general idea arose from wanting to provide space and help for members of our community who could not join in our other artist salons where people joined via video (or taped video) and showed their artwork. If you are unable to participate in that type of gathering and/or identify as having severe ME then this is for you.

*Severe ME Day was created by the 25% M.E. Group.

#SevereME #SevereMEDay #PwME #MyalgicEncephalomyelitis #MECFS #artist

ID: a square image with swirl of blues and then a dash of orange/pink in the middle. The words, Severe ME Artists Project 2025 in the center. With a line underneath and the #MEAction logo at the bottom.

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From #MEAction for Severe ME Day:

Severe ME Artists Project, 2025
#MEAction said:
#MEAction is excited to announce our Severe ME Artists Project 2025 Gallery!

This gallery features work from those within the severe ME community and is in recognition of Severe ME Day on August 8th.

We had over 100 submissions, and we are blown away by this response – thank you!

This project was created to allow those with severe ME to share their artwork with the larger community and be SEEN! The work featured here includes pieces that were created both before and after people became severely ill.

We also want to acknowledge the grief that happens for those unable to practice their art due to illness and those who have had to change the way they continue their craft.

On this page, you will find the video compilation, writers gallery, and the many images submitted. There is a lot on this page, so please take your time and come back often!

*Severe ME Day on August 8th was started by the 25% group. We are grateful for their work and very eager to support artists in the severe ME community.
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This webpage has four sections: a video compilation (video that shows a selection of all the art submitted), writers gallery, video gallery, and art gallery.

EDIT: Updated post to use the correct link!
 
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From Open Medicine Foundation (OMF):

Honoring Severe ME/CFS Awareness Day
OMF said:
Each year on August 8, Severe ME/CFS Day, we pause to recognize the immense challenges faced by those living with the most debilitating form of ME/CFS. It’s a day to acknowledge the suffering, honor resilience, and remember the lives that have been lost.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, disabling disease with a wide spectrum of severity. While some people live with mild or moderate symptoms, approximately 25% of patients are severely affected—confined to their homes or beds, reliant on caregivers for daily needs like eating and personal care. Sensitivity to light, sound, and movement worsens their symptoms, and many require round-the-clock care.

This year, we raise awareness through the lens of Bente, a person with very severe ME/CFS from the Netherlands. Bente shares her experiences with raw honesty, offering a window into life with severe ME/CFS.
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Grigor said:
I made a short video. I was quite brainfogged so I forgot several words. Best to follow the subtitles as well I guess.

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This was such a well done video. Thank you so much for making it ❤️

I posted your video on my Mastodon account and here's one of the responses that I got:

Powerful video, beautifully articulated message. I wish everyone could watch this.

Thank you for sharing it.
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This video from Solve ME was posted a couple days before Severe ME Day but this thread seems like a good place to post it.

"Hollis Mickey on Pacing with Severe M.E."



YouTube summary said:
As part of Solve's EmPOWER ME 2025 event "Pacing: Power in Slowing Down," Solve M.E. Lived Experience Taskforce (LET) member Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing.
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Transcript here:

This excerpt from the video (at about 11:30) resonated with me even though my ME/CFS is moderate, not severe:
Hollis Mickey said:
Often we say, "I crashed myself,” or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable.

In a way, I've reframed this, it's that my body is having an unreasonable reaction to a reasonable action.
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From the ME Association

Kara Jane’s new album is out today
August 8, 2025
‘In Limbo' is the name of the new album released today – Severe ME Day – by the family of Kara Jane Spencer.

The album can be found on all major music platforms or bought as a CD from her website https://karajanesings.com. You can listen to it on Apple Music, Spotify, iTunes, Deezer, Google Play and Amazon Music.

It's five years to the day from when the world first heard the beautiful songs on Kara Jane's first album, ‘It's Still ME.'

The new album celebrates the life of the singer-songwriter who died of ME in January 2023, when she was just 32 years old.

Kara Jane, who lived in Shirebrook, Derbyshire, had a dream. It was to raise £100,000 for post-mortem research into ME and her family now hope to achieve this on her behalf.

‘In Limbo', released today, took three years to make.

The vocals had to be recorded painstakingly line by line as Kara was unable to do a complete take in any one session. The album was then produced posthumously by a team of professional musicians who have donated their time to the project.

Money raised from this album – as with the first – goes into a ring-fenced fund administered by the Ramsay Research Fund, the dedicated research arm of the ME Association.

Her father, David, told us from his home in Staveley: “Kara embraced life with love, generosity and endless determination. She fiercely advocated for ME/CFS, wanting to make the world understand just how serious the illness is, and we are continuing her work.
 
ahimsa said:
This video from Solve ME was posted a couple days before Severe ME Day but this thread seems like a good place to post it.

"Hollis Mickey on Pacing with Severe M.E."





Transcript here:

This excerpt from the video (at about 11:30) resonated with me even though my ME/CFS is moderate, not severe:
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Thanks so much for sharing Hollis’s words, her video, I really love her views on her body reacting unreasonably… and being “alone together in this” .
 
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