The Betrayal of the Worldwide Health Institutes’ Passivity in Erasing a Deadly Plight

At first, I’d been on a plane, in a window seat, grounded and waiting to deboard. I thought this for a long time. Now, though, the scene takes me to the backseat of a car – my parent’s car – on the highway, a grey winter sky over the flat Midwestern US.

But either way, what I’m getting at here is the moment I realized I was not alone in my fury, the very instant I read a sentence that today I cannot even remember verbatim but contained one word that cast a lone shaft of long-overdue solace: furious.

To paraphrase, the sentence read: “There are thousands, maybe millions, of Myalgic Encephalomyelitis (ME - formerly called chronic fatigue syndrome) sufferers out there who’ve been denied any chances at meaningful care, and they are furious.”

It might have been 2015 or 2016 when this revelation came to me through my phone screen as I passed the time on the ride home from a winter holiday. I’d been trying like mad, as we all do, for any meaningful information about the illness that had loomed over me since 2009. It wasn’t until I read that sentence, though, that word, that I realized others out there were equally consumed as I with despair, uncertainty, and iron-hot rage.

I knew I wasn’t alone in my illness, but I had felt alone in my wrath towards it and the doctors who fobbed it off as anxious nothingness. They are furious. I read and reread it, as if I could harvest acres of hope from just three small words.

In the time since that winter day, I’ve slowly built invaluable bonds with other patients, and I feel honored to be part of the lifelines that have kept myself and so many others afloat.

But it isn’t nearly enough.

It’s times like this when we must spread the ugliness of the truth, in all its shadowed gore, for the veil to lift, and for hope to truly dawn.

Why did it take half a decade before I realized others felt exactly as I did? Why was I under the dismayed impression that nobody was standing up for us or each other? Maybe everyone who was as sick as I had just quietly accepted their state? Surely, I couldn’t be the only one. It had always felt so absurd to me, and that’s because it absolutely was.

What I subsequently learned about this critically widespread, life-ruining, chronic disease shattered my trust in everything I thought I knew.

Some of it echoed of Middle Ages techniques, like force feeding and mandatory exercise therapy for severely ill and weak patients. Millions in stolen federal funds, criminally siphoned not by any common thieves, but by the institutions most of us had grown up confidently trusting. Even death threats from sick and disdained patients, an accusation now debunked, all highlight the extreme, baffling hostility of ME history.

As a pre-pandemic ME patient, I thought Covid would be the wake-up call to begin funding, researching, and treating post-viral diseases with the direness and urgency that’s sorely needed. Instead, more than four years on, the National Institutes of Health’s RECOVER Long Covid initiative has become a side job and a thinly disguised joke, with excessive “observational studies” and a trial involving the over-the-counter melatonin among its pathetic accolades.

The NIH now is claiming to be out of funds for RECOVER. They have not requested any further allocation from Congress.

“We are furious!” And we have more reason now than ever before.

The long-buried truth is that ours is a collective story of lifetimes obliterated by tremendous greed and derision, starved into darkness by, among other absurdities, a knight.

Yes, Simon Wessely (I will not use the “sir”), of the UK’s National Health Service, has been the longstanding headmaster of deceit and dictator of denial, using his political and social power to insist that ME is a mental illness; a modern-day hysteria, and thus waging a devastating war on unimaginably ill and suffering patients.

Never in my life could I have conceived, in this modern world, willful stupidity on such a staggering scale. The scandal is so enduring, and the callousness so entrenched. Even after all these years, I continue in constant disbelief.

We are growing in numbers, and once again, louder this time: We are furious!

ME is like no other disease. This fact alone should’ve meant that it would have captured the curiosity of the medical field long ago. Of course, a mountainous helping of blame goes to the field of psychiatry for hijacking ME and preventing decades of meaningful research and progress.

What I’m seeing and sensing now, though, even with the huge influx of ME patients due to Long Covid, is a deeply unsettling continuum of apathy.

Governments and health agencies across the world are continuing their decades-long tradition of putting this deadly disease on the back burner…indefinitely. Meanwhile, some of the most good-hearted people I’ve ever met are suffering tremendously, young people are contemplating (or are already scheduled for) early death. Children and teens are missing vital years of their lives as they lie in bed suffering.

Yes, we are still furious! And very weary. And absolutely, terrifyingly desperate.

Because all we have right now is each other, a handful of dedicated scientists and journalists, and a national institute content with making a farce out of a disease so severe and debilitating it often leads to suicide.

The very idea that the NIH, NHS, and numerous health agencies worldwide have largely succeeded in burying such a longstanding humanitarian and societal catastrophe is something I don’t think I’ll ever comprehend. Indeed, no one should have the responsibility to know so intimately this daily, hourly, physical torture. The weight of it all is too much to bear, and even after Covid, with all the job loss, economic insults, human suffering, and death, the people with the money to stem this disaster - namely many of the world’s most powerful public health institutions - remain happily out to lunch.

In 2024, almost a decade since that lone midwinter day, and nearly 15 years since I first became ill, after countless failed treatments, my ME is no longer relapsing and remitting. I’ve been mostly severely ill since March 2022, and presently worse than I’ve ever been. Currently, I am bedridden save for the times I can obtain fake, borrowed energy from stimulant medication, like today, right now. It’s the only way I can write this.

—Bridget O’Shea