No Secret Conspiracy: Medical Injustice Is Right in the Open in the COVID-19 Pandemic

I wrote this in May 2020 for #MillionsMissing, and it is even more relevant as we face an almost intentional new wave of COVID-19 in the United States along with the mounting Long COVID crisis.

Image description: black words painted on wall reading “Let the rich pay for COVID 19” with a circle-A anarchy symbol. Photo by Etienne Girardet on Unsplash

I wrote this in May 2020 for #MillionsMissing, and it is even more relevant as we face an almost intentional new wave of COVID-19 in the United States along with the mounting Long COVID crisis:

It’s a hard reality that there’s no secret conspiracy can be neatly unraveled like a tangle of yarn, nor a magic bullet that’ll make it all better…

The truth is hard but clear: We face significant challenges in coping with our own health.

But our lives depend not only on naming and fighting for specific progress against [myalgic encephalomyelitis/chronic fatigue syndrome] ME/CFS, but on bringing about the just transitions we need in our society at large, so health justice – including ME justice -- can become not just possible but inevitable.

Here’s the whole piece:

As someone who has been blessed to be an HIV/AIDS, research and health care activist for most of my life at this point, I’ve seen how community mobilization can change the world, and bring about lifesaving research, treatment and care.

I’ve seen how people with chronic conditions and disabilities are truly experts, and how our insights and needs are best served in partnership with medical professionals and scientists.

I’ve seen how we can thread a path between data and instinct, especially when the data itself is so scarce, to find a way forward to live as well as possible.

In all of this, I recognize my status as a white person with race, class, geographical, health insurance and citizenship privileges - plus the honor of spending years in ACT UP, the HIV activist group, and the groups and movements it spawned, as (among other things) a research and treatment activist.

But it’s only with this considerable privilege, knowledge, access and support - and still with significant strain - that I can manage the proactive self-care and medical system engagement I need. I can still work, dream of a future, and advocate for myself and others in times that call us all to action.

It’s still a lot. And there’s so much unknown, and now more than ever, so much fear.

And in the face of so much fear and unknown, it can be almost reassuring to feel like we’re uncovering secret conspiracies behind ME, or HIV, or COVID-19.

Because it’s much harder to live with the reality. The reality is that there’s no central secret conspiracy. The vicious injustices of the medical and economic systems that underlie our suffering are right out in the open.

Since my childhood, there’s been a systematic and open effort to dismantle the meager federal safety net for human needs in the United States, while sowing suspicion and distrust among people – especially white people – that our government could be anything but a force of harm and duplicity.

There’s no secret that factors like poverty… lack of safe housing… mass imprisonment… and the disbelief that women and queer and trans people know what’s going on with our bodies …   are core health issues -- as these dynamics have worsened, and health care remains inaccessible or uneven, we’ve become even more vulnerable to widespread epidemics that in the years of the emergence of HIV.

The injustices of privatized, for-profit health care, an open disregard for the scientific processes by our leaders, and a distancing of research priorities from human needs have set up the conditions to ensure that our current response to ME, and now the COVID-19 emergency, are fragmented, insufficient and logical only to the extent that the priority is making money for the already-wealthy.

So now, as these chickens come home to roost, we now face a widespread health crisis with a federal government that intentionally dismantled its own pandemic preparedness and response infrastructure. It has told states they are basically on their own to combat COVID-19, and that the distribution of relief resources – those few that have been eeked out for actual health needs --  should be a partisan issue.

And today we fear that many thousands of people may join our ranks, if it proves true that COVID-19, like other significant viral infections, can fuel progression to chronic illness and ME. [This was written in May, 2020 and indeed is has proven true]

It was people living with HIV — many of whom did not survive into the era of effective treatment at the end of the last century — who taught me that data is as important as our passion, and that health is much more than a matter of disease and medicine but also of fundamental human rights.

And that’s how I know we can and must fight for so much more, when it comes to ME.

Some who get ME will have knowledge and resources to cobble together support, if they - like me - are financially stable, have less aggressive presentation of the disease, benefit from class and race privilege, and live in the rare location that has a specialist.

If we are to collectively survive COVID-19, and make the progress we need to treat and prevent ME, it is clear that our society needs to transform.

It’s a hard reality that there’s no secret conspiracy can be neatly unraveled like a tangle of yarn, nor a magic bullet that’ll make it all better.

The truth is hard but clear: We face significant challenges in coping with our own health. But our lives depend not only on naming and fighting for specific progress against ME, but on bringing about the just transitions we need in our society at large, so health justice – including ME justice -- can become not just possible but inevitable.

We are on the path paved by generations of social movements that have been and continue doing the dogged work to ensure that millions will no longer go missing, even as we push for the specifics we need to live and thrive in our bodies.

Thank you for anything and everything you are doing in this struggle. I am honored to be among you.