Today, on International ME/CFS Awareness Day (May 12), we stand together to honor every person living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a disabling, life-altering disease that still lacks a diagnostic test, effective treatments, and a cure. This day is a reminder of the strength and resilience within our community—and of the urgent need for answers.
People with ME/CFS face devastating physical symptoms: impaired function, unrefreshing sleep, and post-exertional malaise (PEM)—a delayed worsening of symptoms after even minor activity. Many also experience cognitive impairment, making it hard to concentrate, process information, or find words.
Orthostatic intolerance is common too, causing dizziness, rapid heartbeat, or fainting when upright. People with ME/CFS often live with chronic pain and a wide range of other symptoms affecting nearly every system of the body.
As one member of our community, Keith Jackson AM, shared:
“Living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has fundamentally reshaped every aspect of my daily life. I experience firsthand how this complex neurological condition creates profound challenges that are often invisible to others.”
Many are confined to their homes. Some are entirely bedbound. Children and adults alike have had their lives interrupted, dreams postponed, and needs overlooked. Despite the severity of this disease, research funding has remained woefully inadequate. Too many have endured disbelief from healthcare providers, dismissal from society, and years of isolation. ME/CFS is not rare—but it has been treated as invisible.
At Open Medicine Foundation (OMF), we are working to change that. We’re advancing rigorous scientific research and medical education, building global collaborations, and ensuring that the patient voices are central to all we do. We are pushing for answers—because people with ME/CFS and Long COVID deserve to be seen, believed, and helped.
Amplifying Community Voices
For ME/CFS Awareness Day, individuals around the world used their limited energy to take part in OMF’s social media campaign—sharing photos of themselves holding signs that complete the sentence: “ME/CFS is…” Each message is deeply personal and a powerful reminder that this disease can no longer be ignored.
We invite you to visit our Community Voices page to see these moving posts. Please take a moment to read and share them with others. Every voice shared helps make ME/CFS visible.
To everyone living with ME/CFS and Long COVID: we see you. We believe you. And we are committed to a future where effective diagnostics and treatments exist.
However you choose to engage today—whether by sharing community voices, wearing blue, or simply learning more about ME/CFS—you are helping shine a light on a disease that has been in the shadows for too long.
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.
We are grateful to stand with this powerful community—committed to making ME/CFS and Long COVID seen, understood, and solved.
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