The ME You Don’t See

Illustration by Amanda Francey

I was motivated to create the below graphic after hearing the heartbreaking news that another beautiful person from the ME community passed away a few days ago.

Illustration by Amanda Francey

James Strazza was a talented poet and musician who developed myalgic encephalomyelitis (ME) in 2009. He spent ten years getting progressively worse without a diagnosis, and had been completely bed-bound since 2019. I truly believe he would still be alive today had his illness been recognised early and taken seriously by a knowledgeable doctor.

[embed]The Poet | Song written and performed by James Strazza. Filmed by Syrelle Fonseca | 2012

Over the last two years, I’ve lost two friends to this disease. People with severe ME die from suicide, organ and heart complications, or starvation and dehydration, often as a direct result of medical neglect and the failure to provide appropriate care.

ME should never have been renamed “chronic fatigue syndrome” (CFS) by the CDC in the 1980s. That name has caused enormous harm. For decades, patients have been dismissed, ridiculed, and disbelieved because society, and much of the medical profession, wrongly assumes this disease is simply about being tired or unwilling to get out of bed.

ME is not fatigue.

It is a serious, debilitating neuroimmune disease that can destroy every aspect of a person’s life. And post-exertional malaise (PEM) is not “feeling exhausted after doing too much.” PEM is the worsening of multiple bodily systems after even minor physical, emotional, or cognitive exertion. The immune, metabolic, cardiovascular, autonomic, digestive, and central nervous systems can all become significantly more impaired, sometimes permanently.

Four years ago, James tried to shave by himself. He managed barely a minute before his arms became too heavy to lift the razor to his face. Soon after, he was too weak to pick up a slice of apple to eat. Within minutes, his body spiralled into a severe crash. After struggling to sip a few mouthfuls of pureed soup through a straw, he collapsed completely and could not move for hours.

[embed]James during a severe crash after attempting to shave | 2024

This is the reality of severe ME that most people never see.

If you’re reading this, please share this post and help spread awareness that ME is a serious and life-altering disease that has been neglected by governments and underfunded by medical research bodies around the world for far too long. Until research funding reflects the scale and severity of this illness, millions of people will continue to face an uncertain and devastating future without effective treatments or hope for recovery.

[embed]Who’s Gonna Care For Me | Song written and performed by James Strazza. Filmed by Syrelle Fonseca | 2012