The 15th of March was International Long Covid Awareness Day. Three years in, most people are in fact aware of the illness, but not aware of how dire the situation really is. We need help. I’ll try to explain.
There is basically no support for Long Covid. Like…none. It was thought that it’d be the catalyst to help all the people who have suffered with post-viral illnesses for millennia. Nothing much has happened. No biomarkers, no treatment, and no bio research funding in New Zealand.
Long Covid is debilitating. Like its most related illness, ME/CFS, at the severe end you’re bed-bound. You’d be in hospital if the hospital could help you. They can’t. It affects millions and costs economies billions. It has a higher disease burden than MS, HIV and some cancers.
We crowdfunded to get research started but there’s only so much you can do. Researchers need to put food on the table too, the hours they can volunteer are reduced while they do paid work. The research that they want to do, which could help millions, gets put on the back burner.
The MOH funded a study that was important in validating what we already knew – that Long Covid is devastating, that the healthcare system doesn’t offer adequate help, and that it disproportionately affects Māori and PI. Cool. Now what? There’s no plan to do anything about it.
I’ve mentioned before that in the past, illnesses with hallmark symptoms of crippling fatigue were usually only associated with white people. If you were brown and presenting with fatigue, you’d be dismissed as lazy. Long Covid shattered the narrative. It can affect anyone.
So Māori/Pasifika biomedical researchers should be involved in our project. 100%. But there is already a shortage of them and we have approximately no money to pay any of them with. Those are pretty big obstacles eh. But surely abroad there’s some solid progress happening?
To be honest, not really. Nothing that touches the scale of the issue. A survey here, another bogus psychological treatment there. The actual biomedical work lags drastically behind. It’s too ‘risky’ because there’s no guarantee of profit. Meanwhile more get sick with no answers.
As I said, people are aware. It hasn’t translated to action. Our lead researcher Dr Anna Brooks has appeared in the news like 100 times. Still, our research struggles along on small-scale donations from individuals, which we DEEPLY appreciate – but we need proper investment.
The urgency, collaboration and investment that rapidly developed the COVID vaccines proved what is possible. A fraction of that focus being put toward post-viral biomedical research could relieve, and prevent, an unfathomable amount of human and economic suffering.
And the people suffering are too sick to constantly advocate for themselves. They can’t be loud and disruptive because they’re self-managing crippling symptoms, mourning their former lives. Many are withdrawn from society. They need others to step up & champion their cause.
Because bluntly, this could happen to you. If you’ve avoided it so far, congrats. If you’re not as lucky after your next infection, you’ll be stuck with every other post-viral illness sufferer wondering why there have been no answers since the WHO recognised ME/CFS in 1969.
This isn’t to be negative or to discount the work of the people who are trying their best. They already understand the odds they’re up against. People with ME/CFS have known they’ve been abandoned for decades. It’s for everybody else who needs to grasp the reality of this situation.
There is so much yet to learn about the ways in which viruses affect the human body and the immune system. There’s a huge opportunity here for progress, but there isn’t the public demand for the resources or the political will to follow through. We desperately need change.