Honoring Severe ME Awareness Day 

August 8 marks Severe ME Awareness Day. Today we are raising awareness through the lens of Eileen, a late member of our OMF community. Eileen fought both severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and cancer. She sadly passed from cancer in 2023.

Eileen’s life was profoundly impacted by severe ME/CFS. Her raw journal entries, as shared by a family member, offer us an intimate glimpse into the daily trials and tribulations faced by individuals suffering from ME/CFS.

Her family member shares, “Eileen grappled with both ME/CFS and cancer. For a decade, her conditions kept us apart until last year when her lung cancer progressed. She eyed an experimental treatment in Germany as her last hope, but ME/CFS thwarted her plans due to lack of energy. Reading her journals, I’ve come to understand the true depth of her suffering caused by ME/CFS, and her resilience.”

Eileen’s Journal Entry – January 16, 2017 

Depressed today. At the end of the day I want to give up thinking. I want ease, simplicity, graciousness, and relaxation.

I can only turn my attention to obvious activity. “Do the task that lies nearest to you.”

I’m “with it” only briefly each day. I have only one frightened fool to deal with: myself. Nobody else cares. I didn’t have a meal tonight. I’m feeling lost. I listened to the sound of silence and I was surprised to feel alive, however briefly. I want to enjoy life. Simple stuff. Like work! Like normal movement. No advocacy. I want to enjoy.

Eileen’s introspection was hard won in these brief moments. Betrayed by her body she had to accept her limits. Being so independent though, Eileen found this challenging. When you can’t even rely on yourself  it’s hard to rely on others.

Eileen’s Journey Entry – June 12, 2017 

Today I remembered the young woman I was, and all her dreams. Her dreams and her concerns. Her way of being. I have felt not just grief but a kind of loss. That has been an exile, an exile from my own way of being.

I need burial plans. A church service doesn’t make much sense, much as I would have liked one. A  remembrance of life? Nothing to remember. My testimony would be to those who endure ME/CFS, to their bravery, to their solitude, to their endurance, to their invisibility.

What has this disease taught me? What has life taught me? Why did I come? I wanted space. I wanted openness. I wanted gentle kindness,  especially for the vulnerable. I thought that I had to get it before I could give. I thought that I had too little to give. And I was probably right.

In the last decade of my life what did I learn? I learned to be broken. I  learned to endure hopelessness or something close to hopelessness. I learned the necessity to stop trying though I didn’t master the art.

Eileen never fully gave up. Amongst the daily struggles, set-backs and bad news, she still found joy in small things, such as her art. This is her original work.

Eileen created this piece depicting sunflowers to express how she felt as a person living with ME/CFS. She was a sunflower who desired to live but was held back by symptoms only she understood. Though many with ME/CFS feel alone, they stand together in solidarity even on the days the disease keeps them from everything they once knew.

Eileen supported the research of Open Medicine Foundation with hope that our unique approach to collaborative research across the globe will bring relief to all suffering from ME/CFS, Long COVID, and other chronic complex diseases.

Eileen’s experience and thousands of other stories like hers underline the need for rigorous scientific research and innovative treatment options. At Open Medicine Foundation (OMF), we are dedicated to changing these stories.

Our mission is to drive groundbreaking research, fuel hope, and improve the quality of life for individuals suffering from ME/CFS.

Today, as we remember Eileen and pay tribute to all individuals grappling with severe ME/CFS, we reaffirm our commitment to this crucial work. We pledge to continue our relentless pursuit of answers and our quest for transformative treatments.