Long COVID Hour

Betsy Ladyzhets and Miles W. Griffis talk about their work with ⁠The Sick Times⁠, a start-up media outlet focused on Long COVID.

If someone gave you one million dollars ($1M) for Long COVID advocacy, how would you use it to get the government to increase funding for Long COVID research?

An uplifting and energizing conversation coming off of last week’s successful Senate hearing on Long COVID. We have an opportunity here—let’s get work.

The Long COVID Hour film club pick for January was Crip Camp: A Disability Revolution. This inspiring film follows a group of disability activists from their beginnings at a summer camp for people with disabilities through their successful work advocating for disability rights regulations and laws.

Bernie Sanders gets COVID, Jon Favreau writes a controversial tweet, Alice Wong starts a hashtag, and a disability justice campaign is born.

The leadership team of the Patient-Led Research Collaborative (PLRC) came to the Long COVID Hour to talk with the community about their organization, victories, goals, and opportunities for getting involved. PLRC is a group of Long COVID patients who also do Long COVID research and research-based advocacy.

Dr. David Putrino is one of the most prominent Long COVID researchers and clinicians. He shares his perspectives on Long COVID research and care and provides an update on his groundbreaking clinic for complex chronic illnesses.

For our third Long COVID Hour film discussion, we watched The Hunger Games. Imagine a world where in one instant, your whole life can change and you have to figure out who you are, what you're capable of, and who controls your fate... Sound familiar? If you're interested in joining the Long COVID Hour film club Discord server, DM me on Twitter (@desthlewis).

Last month, multiple people spoke about the need to include BIPOC patients in LC advocacy and to help BIPOC communities struggling with this illness. Message received! This week, Angela R. Rudolph (@chigrrll) and I host a conversation about these issues.

Following the first Long COVID Moonshot action on November 14th, we discuss how it went and where to go next.

What is a moonshot? Why do we need one? What will it take to get one? Let’s talk about it.

The Long COVID Hour welcomes Dr. Amy Proal, the founder, president, and research director of the PolyBio Research Foundation.

We discuss United in Anger: A History of ACT UP, the 2012 documentary about the HIV/AIDS protest movement, and see what we can learn as we build a new Long COVID movement.

What has Long COVID taught you about disability and ableism?

For our first film, we watched and discussed Unrest, a documentary about Jennifer Brea's journey with myalgic encephalomyelitis.

Stephen Smith, the (pre-COVID) ME patient behind Post-Viral Trials News, comes to the Long COVID Hour to share a wealth of knowledge about the current slate of clinical trials for Long COVID and related conditions.

In the first Long COVID Hour, more than 10 Long COVID patients speak about their top asks for the government.