The Sick Times

[the-sick-times]

Lisa Kava had a brief go of advocacy two years ago with Long COVID Moonshot. Run by about half a dozen people with Long COVID working together from their sickbeds around the country, the campaign aimed to rally the community around an ambitious call from Lisa McCorkell (then of the Patient-Led Research Collaborative) and researcher Michael Peluso. In late 2023, they published an influential article calling for a Long COVID research moonshot of 1 billion dollars per year for 10 years.

In January 2024, Sen. Bernie Sanders convened a Senate hearing for Long COVID, and the call for a research moonshot gathered a great deal of press and community attention. In a move that went beyond what they could have hoped for in such a short time, Sen. Sanders followed this hearing by introducing a Long COVID Moonshot bill in the summer of 2024.

The bill still stalled after Trump’s election.

This week at The Sick Times, Lisa shares a few things here that she learned in her brief time with Long COVID Moonshot.

[the-sick-times]

To mark International Myalgic Encephalomyelitis (ME) Awareness Day, advocates participated in marches and “lie in” protests in 42 cities across Germany. The demonstrations, which organizers say drew over 12,000 people in person and 700 people virtual participants, took place on May 8 and 9 to recognize the debilitating, multi-systemic disease.

LiegendDemo, which translates to “lie-in demonstration,” has organized nearly 100 demonstrations of this kind in Germany since 2022, the group states. It has also organized protests and actions drawing attention to people with severe ME, alongside information booths, poster campaigns, and other initiatives to educate the public.

The group’s demands included “an end to the psychosomatic treatment of ME by doctors and health insurance companies, mandatory training for medical personnel, and large-scale public health campaigns.”

Similar demands have been echoed across Europe this spring by people with infection-associated chronic diseases. Last month, advocates in Paris, France, interrupted a conference and demanded biological research into Long COVID. And today, the United Kingdom group Long COVID Advocacy, published an open letter demanding the U.K.’s Royal College of Psychiatrists ensure its programming reflects the extensive biological research on Long COVID and ME.

Bavaria’s former Minister of Health and Care, Klaus Holetschek, spoke at one of the #LiegendDemo events in Munich. Afterward, he posted on social media, reiterating his support for people living with the disease.

“ME/CFS is a serious physical illness,” he wrote. “Affected people need recognition, care, and effective, binding research… It’s not enough yet. We need more medical expertise, earlier diagnoses, better treatment options, and a strong voice for the people who can often no longer speak up for themselves.”

Bavaria’s former Minister of Health and Care, Klaus Holetschek, spoke at one of the #LiegendDemo events in Munich. Afterward, he posted on social media, reiterating his support for people living with the disease.

“ME/CFS is a serious physical illness,” he wrote. “Affected people need recognition, care, and effective, binding research… It’s not enough yet. We need more medical expertise, earlier diagnoses, better treatment options, and a strong voice for the people who can often no longer speak up for themselves.”

LiegendDemo is a part of a broad trend of international public advocacy and activism for ME and related diseases like Long COVID that has accelerated since the start of the COVID-19 pandemic.

Hundreds of advocates in Zurich, Switzerland also took part in an action for the international awareness day over the weekend. And last December, thousands of people took part in the #NietHersteld (Not Recovered) action in The Hague, Netherlands. In the United States, #MEAction has held annual #MillionsMissing protests to raise awareness and make demands for the millions of people affected by the disease, which has been called “the greatest medical scandal of the 21st century.”

Photographer Maria Wagner documented Berlin’s #LiegendDemo action on May 9 in front of the city’s historic Brandenburg Gate where a thousand people gathered.

Hundreds of advocates in Zurich, Switzerland also took part in an action for the international awareness day over the weekend. And last December, thousands of people took part in the #NietHersteld (Not Recovered) action in The Hague, Netherlands. In the United States, #MEAction has held annual #MillionsMissing protests to raise awareness and make demands for the millions of people affected by the disease, which has been called “the greatest medical scandal of the 21st century.”

Photographer Maria Wagner documented Berlin’s #LiegendDemo action on May 9 in front of the city’s historic Brandenburg Gate where a thousand people gathered.

[the-sick-times]

Across the U.S. and around the world, politicians have falsely declared the pandemic “over,” and they continue to ignore Long COVID despite its impact on society. There are still zero approved cures for it, myalgic encephalomyelitis (ME), or other related chronic diseases; patient-led advocacy and activism are as important as ever. Advocates emphasize that a broad range of strategies — going beyond efforts aimed at national governments — is needed to secure better care and outcomes for patients.

Federal policy changes can have big impacts, but are often slow, and may not affect other systems and structures that chronically ill patients rely on, such as healthcare provision or access to personal protective equipment like masks and hand sanitizer. Strategies like state and local advocacy, provider education, mutual aid, and direct action can sometimes produce change more quickly and can strengthen broader care structures, all while building community.

Read more from Chelsea Rudman at The Sick Times: https://bit.ly/4qRE5fb

[the-sick-times]

If you developed #LongCOVID during the first wave of COVID (late 2019-early 2020), how do you feel thinking back to that time? What are you grieving? What do you wish more people knew about COVID & Long COVID? Submit a voice memo reflecting on 5+ years of Long COVID for our podcast! https://bit.ly/3E301QM

[the-sick-times]

We made a zine! To celebrate our first anniversary, we commissioned artist Katie Drackert to create a printable mini-magazine of our first year’s highlights, as well as top Long COVID and COVID-19 resources.

We wanted to bring The Sick Times offline and into coffee shops, art fairs, community centers, mask bloc distributions, and anywhere else our readers want to share our work. Please print it and distribute it widely!

You can download and print the zine using the file below, or read it online here.

[the-sick-times]

Press release: The Sick Times announces one year of covering the Long COVID crisis - The Sick Times

“Our reporting on Long COVID remains as vital today as it did when we launched,” executive editor Miles W. Griffis said. “Many of our collea