Decades before the Covid-19 pandemic, ME/CFS was among the most hated, avoided and divisive illnesses among healthcare professionals across the globe.
It divides doctors. It divides patients from their doctors. It can smash apart friendships, partnerships and careers. It can irreversibly divide families.
photo by Sharon Rosseels
It divides the public, with some buying into the psychobabble while others believe in the biologic truths behind these ME/CFS, Long Covid and other post-viral conditions.
More profoundly, ME/CFS and Long Covid divide its sufferers from the rest of the world. Not only does the bone-crushing fatigue keep us out of workplaces, prevent us from traveling and participating in social activities. There is a layer even below that surface. It’s the murky underworld, shrouded in fear and uncertainty, that keeps us truly detached and divided from the rest of life.
Because the myriad of post-viral illness symptoms and the subsequent suffering, it’s my belief that prolonged, untreatable illness is simply too far outside the range of experience for most people that conveying such an existence to someone who does not have firsthand experience is virtually impossible.
Even if you are lucky enough to have friends and family who are supportive, spending time with them while knowing that, in their lived experience of ongoing, decent health, they have no way of comprehending your everyday anguish. This never fails to shatter the soul.
The painful notion never abates. The other people in your circle get sick. Then they get better. Then they move on with their lives. You don’t get to do that.
Then, there’s the invisibility of ME/CFS, Long Covid and like conditions.
ME/CFS has isolated me from the rest of the world in a way I could never have previously imagined. I often have a sensation of living underground, with dark and ferocious truths that only myself and other sufferers can truly see. Friends, family and acquaintances might say things about how when the weather turns nicer, we might feel better. Or maybe there’s some kind of medicine out there that can cure this thing. But those of us living in the swampy dwellings of the underground world, with our terrible experiences with doctors, snake oil salesmen and toxic positivity, among many other things, know the sobering truth: treatment does not currently exist.
There is nothing that can be done. We have an astoundingly poor quality of life. And that’s it.
Staying positive is always recommended, and I have nothing against such advice. It can feel reassuring to see the attention that post-viral illnesses are now garnering — something that was catastrophically lacking in pre-pandemic years. Yet even within these consolations, disappointment still lurks in the corners. We hear about funding cuts, research projects being halted and abandoned. We hear about Long Covid clinics and even such esteemed places as the Mayo Clinic “treating” post-viral illnesses with exercise regimes and talk therapy. We hear about these long-debunked treatment methods not only still being practiced but even receiving federal funds.
We hear misinformation, like how most Long Covid patients recover within a year. Real truth: they stop going to doctors within a year because they realize, just as ME/CFS patients have known for years, that most doctors are useless in their approaches to post-viral diseases.
Instead, patients take their illness into their own hands with DIY treatments, often mentioned on social media platforms by other sufferers. Again, a stark division between patients and the very providers who are supposed to care.
Finally, there’s politics, and it’s no surprise that post-viral illnesses have created friction on many sides of political isles worldwide.
The divisions that invisible illnesses create engulf a far and wide swath of modern society. Rampant beliefs that Long Covid is “all in the mind” prevail, even after so many years of biologically abnormal evidence surfacing in post-viral fatigue patients. It’s truly disheartening.
ME/CFS and Long Covid, along with their tortured sufferers, continue to be the butt of jokes. Will there be effective treatments in our lifetimes? I’d like to think so, but thirteen years of ME/CFS has given me a soft spot for pessimism. Watching this particularly tortured chapter in medical history repeat itself over the past three years has certainly fed and nourished that soft spot into a default setting for myself and doubtlessly many others.
Drug trials will continue to move at their usual glacial pace. The promising BC 007 trial taking place in Germany, although previously fast-tracked, has more recently endured setbacks resulting in delays for the drug’s potential market availability. The repurposing of HIV drugs, which I believe hold the most promise for ME/CFS patients, seem few and far between in terms of current trials.
Nearly three years into the pandemic, all we can do is hope. We can hope that we didn’t swing the bat and miss bigtime on a global sense of urgency. We can hope the economic fallout from Long Covid will finally force governments to take these illnesses off the shelf and address them with the immediacy that is so long overdue. And we can only hope that many years from now, we can look back on the decades of the appalling mishandling of post-viral diseases as an unrepeatable aberration of humanity.
—Bridget O’Shea