On Monday, I will be arrested at the White House for the first time since the 2012 protest during the International AIDS Conference.
Description for image above: 13 people in various seated positions are close together on the sidewalk against a tall black iron fence with a lawn and large white building in the background, which is the White House. The fence has hundreds of thick red ribbons on it, symbolizing HIV activism. Photo credit: Marcelo Maia
I will do so as a disabled and chronically-ill person living with Long Covid and ME/CFS (myalgic encephalomyelitis, which affects about 50% of people with Long COVID — I’ve probably had it for decades but was diagnosed in 2017).
We are gathering at the White House to demand urgent action on the pandemic and public health emergency of Long COVID and other infection-associated complex chronic diseases.
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The protest, organized by #MEAction, will be taking place on Monday 9/19 from 12-1/1:30pm on Pennsylvania Ave in front of the White House.
Most of the organizers and participants in this protest are ourselves Still Sick, Still Fighting, and calling for the solidarity of healthy or manageably chronically ill allies.
This new pre-print echoes the CDC’s Pulse Household study in showing that over 7% of people in the United States have some form of Long COVID. And we are finding that about half of people with Long COVID have ME/CFS.
As a longtime ACT UP member, I saw what a difference it made when people living with HIV took to civil disobedience to confront misinformation, bias, politicization and neglect in the AIDS crisis.
ACT UP took over Grand Central Station when every 8 minutes marked another AIDS death.
Description for image above: Grainy black and white photo shows three people in the front of a black banner that is almost as tall as their bodies. They are in movement, pushing it up in front of a large schedule board at Grand Central Station that announces train departures.
Now, every ten minutes, another three people in the US die of COVID -- today and every day. The survivors — whether or not we are vaccinated, whether or not we were mildly or severely ill or even asymptomatic — are still at risk of long-term or lifelong chronic illness because #PandemicsAreChronic.
With a death every 3.5 minutes from COVID-19, how can we do nothing? Federal funding is disappearing, pandemic prevention is stalled or reversed, research efforts have sidelined the experts who know most about post-viral conditions, and most of those left chronically ill are left fending for ourselves or even targeted by denialists online.
I’m fortunate that I’m healthy enough to make it there, and to not face severe health decline in the days after, as many of my peers with more severe Long COVID and ME/CFS do. I have relatively mild presentation of these complex chronic conditions, though they affect my every moment and all areas of my life for decades.
Even still, I likely would not have been able to be there without the wisdom and support of people with Long COVID. They have educated me on treatments I added to my vast roster of daily, weekly and monthly medications and supplements that helped lift my brain fog, reduce my chronic pain and stabilize my digestion and sleep.
Yet the support groups that help us gather and exchange this vital information are receiving virtually NO funding, and their members who are unable to work are getting rejected, time and again, from disability benefits or accommodations.
You can also support the protest by taking virtual actions from anywhere on the day of the action, including sharing news and images of the protest on social and traditional media. Unfortunately media coverage of the funeral for Queen Elizabeth will be happening on the same day, so we'll need lots of help to get the attention this crisis deserves! (If you have close connections to DC/national press contacts, please ask them to cover this - I can provide a press release.)
Please register for either in-person or virtual action via the following link to get more info on how to show up for this cause. Thank you for taking a few minutes now and on 9/19 to support the #MillionsMissing from their lives due to Long Covid, ME/CFS, and other infection-associated complex chronic diseases (and thank you to fantastic organizer Claudia Carrera for her message that provided some of the text and much of the inspiration for this post).
Read on for more info and links from #MEAction:
Image description: 2022 Millions Missing Logo. The year is in white text in front of a black background that looks like a broad slash of paint, and #MillionsMissing is to the right of that in black bold capital letters, with the letter i in the word Missing depicted as an icon of a standing person.
Join us to PROTEST at #MillionsMissing 2022! #MEAction will host #MillionsMissing 2022 on September 19th outside the White House in Washington D.C. to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.
Image description: people in red t-shirts holding signs at an outdoor protest. A man speaks into a small box attached to a megaphone by curly cord. The megaphone is held by a woman several feet away.
The pandemic has exposed to the wider public what our communities have known for decades—that government, healthcare, and society at large have systematically deprioritized or erased people with disabling complex chronic diseases. This historical pattern laid the groundwork for the circumstance that people with Long COVID now find themselves in—little medical care, no FDA-approved treatments, and little societal support. The number of people getting sick and not recovering after COVID-19 infection constitutes a growing public health crisis with huge consequences for all. Yet even in the face of this collective devastation, the government is not stepping up. The National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) continually trivialize and dismiss us. The U.S. Department of Health and Human Services (HHS) is not responding urgently. Congress has not prioritized legislation that could improve the lives of people with Long COVID, ME, and associated diseases.
That is why we need PROTEST and COLLECTIVE ACTION NOW! We cannot wait any longer. People are losing their lives. Join us. Fight with us.
Please note, the COVID-19 pandemic is not over. There is significant risk to attending in person. We will have community rules, mask requirements, and do everything we can to minimize risk. Our online component will also be impactful and in need of participants. Please make the right decision for you.
thank you, JD. your work continues to inspire and improve our world