Patient-Led Research Collaborative

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.