Opinion: Long COVID is debilitating to me and 65 million other people. Where is the urgency to treat it?

I got covid in March of 2020. My health has been on a steady decline ever since. I have developed so many ailments and I'm in so much pain that I can no longer work. I'm 33 years old and walk with a cane. I've been waiting for disability for two years now. I've already been denied twice. I'm on the verge of homelessness. There's no help. My life is ruined and there's absolutely nothing I can do about it.

For example, myalgic encephalomyelitis (sometimes referred to as chronic fatigue syndrome) has been dismissed and under-researched for decades. The lack of research has perpetuated a limited understanding of the underlying biology, a lack of diagnostic testing, a lack of respect for patient experiences and an embarrassing lack of action. Research funding is extremely low relative to the burden of the disease and its prevalence.

About half of long COVID patients also meet the diagnostic criteria for myalgic encephalomyelitis. By our sheer number, our advocacy for more research and clinical trials should be harder to dismiss.

This is dismissed and underfunded world-wide.

The status quo - pretending it's all in your head - is in the interests of insurance companies (and governments with disability welfare systems).