Honoring ME/CFS Awareness Day
Today, May 12th, we observe International Awareness Day for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
Millions of people suffer from ME/CFS, Long COVID, and other post-infection illnesses. They are waiting for the chance to get their lives back, while their loved ones feel the pain and heartbreak of watching them struggle—some even bedridden for years.
Open Medicine Foundation (OMF) is working hard to put an end to these devastating diseases through groundbreaking research and medical education.
We ask you to join us in our mission. Please, if you can, donate to accelerate research for a cure in honor of International ME/CFS Awareness Day. Together, we can create a healthier future.
To commemorate this important date, we are honored to share powerful art about life with ME/CFS, and an uplifting story of hope from members of our community:
My name is Bill Hope, and I am from Australia. My wife Inga is a person with ME/CFS. We are both artists.
You may already be aware of Inga’s work, as she is the creator of An Existence Project, a paper stop-motion animation about ME/CFS.
Inga and I met almost eight years ago at an event organized by Sydney University. It was an information evening for people hoping to apply to Oxford University. I’m sure Inga could have gone through with it if she did not become ill with ME/CFS. (I am not academic enough to have made it further than the information session.)
My artwork often represents the complexities of ME/CFS.
This image portrays a whimsical scene that blurs the line between reality and imagination. A bed, complete with pillows and sheets, rests outside alongside a stream with high grass. The bed’s presence outside in such an unexpected location creates a surreal scene with a dreamlike quality.
I have also created a graphic novel called ‘An Interior Life’. Read the full graphic novel here.
‘An Interior Life’ is a short autobiographical comic produced in early 2019. It is a study of the minutiae of a relationship. Intensely personal, this body of work documents a day in the life of a young couple living with this inscrutable illness. The book was presented at an exhibition of the same name at the Lost Bear Gallery in The Blue Mountains, NSW Australia.
I hadn’t meant for the graphic novel to be all about illness, but it was such an overwhelming presence in our lives at the time that it inevitably became the central theme of the work.
Image Description: This image features a woman with long dark hair and glasses, portrayed through a collage that showcases the various activities she engages in throughout the day while living with ME/CFS. The images capture moments of rest in bed, browsing through social media, taking medications, and brushing teeth. Additionally, one of the images within the collage portrays Inga’s daily symptoms, which include nausea, exhaustion, and tension.
Inga’s journey with ME/CFS is sadly like countless other people’s experiences. She had the same unfortunate path of a mysterious illness, misdiagnosis, ineffective medical intervention, and being disbelieved by doctors. She is fortunately in a much better place of self-care, acceptance and pacing, but it has been a terribly long and difficult journey at a great cost.
Inga has been sick the whole time we have been together. It has been an ongoing strain on both of us and changed the trajectory of what we thought our lives would be like.
Conversely, the pressure of illness has made our relationship one of great tenderness and care. Our relationship is very much focused on the essential joys of being together.
ME/CFS is very difficult to understand from the outside. For some people with ME/CFS, many challenges and symptoms are invisible. Because of this, people with ME/CFS often suffer in silence. Despite being with Inga every day, I still can have a hard time understanding some of the things she is going through.
Ultimately, I hope that my artwork can help bridge the gap in understanding for those who are not familiar with ME/CFS.
As we look to the future, the progress of scientific research gives both Inga and I hope. A diagnostic test for ME/CFS would be revolutionary for everyone with the condition. There has also been great progress in public understanding due to the unfortunate rise of Long COVID.
Open Medicine Foundation’s May Momentum campaign provides an opportunity for people to support ME/CFS research and raise awareness of this illness. As someone who has witnessed the impact of this illness on a loved one, I urge you to join us in supporting this campaign. Together, we can make a difference and bring hope to those affected by ME/CFS. Please consider donating today.
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