Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with Long COVID.
For six years, the ME community has joined together for #MillionsMissing to speak with a united voice–demanding health equity through research, treatment, and support. More than one million Americans have ME. #MEAction estimates that 75% of us are unable to work, and 25% of us are homebound or bedridden.
To this tally, we now add Long COVID. The US Government Accounting Office estimates that 23 million Americans have Long COVID, and one million of them are unable to work.
We are in the midst of a mass disabling event.
Yet this is not the end of the accounting. We cannot ignore that one million Americans have now died of COVID, leaving at least nine million people to grieve. More than 200,000 children have lost a caregiver to COVID.
When I write these numbers out like this, it feels clinical and unreal. Abstract numbers on a spreadsheet. But if I think about what ME has done to my life and to my family, and then try to multiply it by one million, and then add another million or more–when I think about suffering on that scale, I feel despair.
In COVID, I see ME writ large–both the suffering and the turning away. Everything the ME community has endured is now the Long COVID experience. The disinterest, callousness, and denial that we have received from institutions and people in power has gone full scale. Our public health system failed to heed our warnings about Long COVID. Our country has decided we no longer need to protect one another from COVID, and the suffering is compounded and then compounded again.
Will there be a reckoning? Can we ever come to grips with what we have done to each other–to our healthcare workers, our children, our marginalized communities? Even if we can somehow count the cost, could we ever pay that bill?
It is so easy to witness the suffering and our failures, and stop there. Grief is heavy, and it is tempting to sit still with its weight. Yet people with ME have always fought. We raised the alarm about post-infection illness from the first days of the pandemic, and we have extended our knowledge and support to the Long COVID community.
We are–all of us–connected.
The ME community has sought justice and health equity for decades. We have achieved so much, but we are still far from our goals. A drippy faucet gets little attention, but a flood requires a full response. One million people with ME has not been enough, but when we raise our voices with millions of long haulers, maybe now we will be.