A Million More, and Counting

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.

This entry was posted in Advocacy and tagged , , , , , , , , , , , , , , , . Bookmark the permalink.

13 Responses to A Million More, and Counting

  1. Lj says:

    I think all your work forME care and treatment will find an answer as a result of people with long Covid

  2. Sam Pearce says:

    #millionsmissing #MEAwarenessDay #LonghaulersUnite
    Hearing you over here on the southside sis xxx

  3. Christine Williams says:

    Thank you for your tireless advocacy for CFS/ME. I know how much energy it takes to keep going while trying to live your own life as best you can. I had to step back a few years ago to conserve as much energy as I could for my own life as I dealt with aging, divorce and the death of my parents. I hope I can still contribute to this important cause going forward.

  4. Lisa Myers says:

    Wow. So eloquently said.

  5. Sue Hendren says:

    This was a lovely post. I also agree with the commentator regarding the effort you put forth on our behalf. I am still hoping to become more active myself. I would like to give back to the community that’s been supportive of me. We may be “missing” but our story needs to be told by those that are willing and able.

  6. Janet Dafoe says:

    Thank you Jennie. Just really hit the mark for me. The enormity of it is just hard to bear day by day. Every once in a while somebody writes something or I see something in Whitney‘s eyes while he lays there year after year and it just looses the floodgates. This was one of those moments.

    • Jennie Spotila says:

      Ah Janet, I hope the flood of emotions was ultimately helpful to you in some way. xoxo

  7. My response is mainstream fiction. By dint of another six years, I’ve finished the second volume in my mainstream literary trilogy with an ME/CFS main character – and am doing all the steps necessary to publish it.

    But finding the readers is still hard, and I think many people’s hearts would be moved if they read about it the way I’ve written it.

    Some extra health problems are making it even harder, but I persevere.

    Thanks for what you do – I KNOW it isn’t anywhere near easy.

Comments are closed.