My Truth, Our Trauma, & A Call to Keep Fighting

Sitting in window seat 24A on a return flight out of Washington DC, I feel myself coming apart. As the plane’s elevation climbs, my grip on my emotions relaxes just enough to let the trauma of the previous day’s events slip through—and I lose control.

The words repeating on a loop in my head: “ME/CFS neglect kills us.”

I had come to Washington for World AIDS Day where I had shouted those words from my wheelchair in a protest outside the White House. I had joined a group of HIV/AIDS, Monkeypox, COVID-19, Long COVID, and ME/CFS activists in a “die-in,” during which we lay on the ground in rows with mock gravestones at our heads. My gravestone read, “ME/CFS neglect kills us.”

A protestors lie on the grass in park in front of the White House, on which a giant AIDS ribbon hangs. Protestors standing in the background hold signs saying "Biden and Congress: fully fund pandemic plans" and "ACT UP, Fight AIDS." Protestors lying on grass hold painted gravestones at their heads. Man lying on ground in mask closest to camera wearing dark pants and a red shirt, orange coat, and yellow beanie with white mask. His holds aloft his left fist clenched and holds behind him a gravestone that reads "ME/CFS neglect kills us." A ray of light from the sun streaks the right side of the image. On the left is a logo of a white circle with transparent letters "#MEAction."

Lying down in front of the Whte House was a public act of protest, so I had raised a clenched fist—in defiance. Now in seat 24A, this flood of emotions is a moment of private pain, so I let the tears come as I hold the names of the dead—in remembrance. 

“ME/CFS neglect killed Heather.” 

“ME/CFS neglect killed Harvey.”

“ME/CFS neglect killed Anne.”

“ME/CFS neglect killed Lara.”

“ME/CFS neglect killed Cindy.”

“ME/CFS neglect killed Lynette.”

I know many more, who I haven’t named, have lost their lives. I know that neglect has wounded many, even when it hasn’t killed. But these are my names; each of us has our own. The people whose spirits and stories I summon. The people who ground for me the reality of this collective trauma. This is not hyperbole. These are people I have known and cared for, and they should still be alive.

For a moment I feel lost in my grief, but then another battle-cry releases from somewhere above in my mind.  Like an overhead oxygen mask I reach for it and slip the chant over my lips. I breathe the words deep and slow.

“Act Up. Fight back. Fight AIDS.”

Blue sky with trees with some foliage and others bare in a park with benches and office builds on the right and left sides. In front stands stands a light skinned black woman in black framed glasses, a red hoodie and a white beanie holding a microphone in one hand with her mouth open wide speaking. Behind her is a dark-skinned black woman with shoulder length hair in a white mask, black top and red skirt with a black purse across her shoulder. Above her head she holds a sign painted gray and shaped as a gravestone with black lettering that reads "Died from COVID apartheid." To the right is a white protestor in a puffy black coat with gray jeans and a black hat holds another gravestone sign that reads "Died from Pharma Greed."

In my mind, I can recall the exact cadence and pitch of the chant, cutting through the cold December air of the White House grounds. They are words of both call and response. I am no longer alone. I am in a circle surrounded by other activists, chanting together. Each of us have been brought here by different colliding pandemic nightmares. But we remind ourselves of our shared power and our faith in each other to keep fighting together. We will prevail. We will hold those in power accountable for the healthcare we need and deserve.

The fight for healthcare as a human right doesn’t end, but the circle expands. This World AIDS Day, I and other people with ME and Long COVID were embraced as we too joined the circle and drew strength from our common call to action.

Will you join us and help #MEAction take BOLD ACTION in 2023 and beyond?

Help #MEAction take BOLD ACTION in 2023 and beyond!

Fund the BOLD ACTION that we fight for each day! Support ME activists as we put our bodies on the line to protest to fight for equity, justice, and a future we deserve.

Donate Now

Take virtual action by emailing our protest demands to President Biden and Congressional leadership.

Our collective trauma is real, and we must name it. But in our grief, we remember that we are not powerless. There is always the invitation to action in collective struggle and solidarity.


Act up.

Fight back.

Will you join us?

The 2022 World AIDS Day action outside the White House united people with HIV with chronically ill and disabled people with Long COVID and ME/CFS and others.


Latest News

Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.

Why We Keep Telling the Story of ME to the Press

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the

Read More »
the words " #MillionsMissing 2023: Scotland calls for healthcare education" appear in white on a red-muted background with the #MEAction Scotland UK logo in the bottom right hand corner.

#MillionsMissing 2023: Scotland calls for healthcare education

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland. Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.


Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Scroll to Top