PT546 – Psychedelic Outlaws: Cluster Headaches, Citizen Science, and the Story of ClusterBusters, with Joanna Kempner, Ph.D.

In this episode, Joe interviews Joanna Kempner, Ph.D.: associate professor in the Department of Sociology at Rutgers University and author of the recently released, Psychedelic Outlaws: The Movement Revolutionizing Modern Medicine.

The book profiles the history and groundbreaking work of ClusterBusters, a nonprofit researching and spreading awareness about what someone named Flash discovered decades ago: that for some people, psilocybin and LSD could stop cluster headaches from coming on. Through early internet message board posts and email exchanges between Bob Wold, Rick Doblin, and others, Kempner pieced together their story. And through attending ClusterBusters meetings, she discovered that a lot of the true healing lies in the bonds formed and the hope people find when seeing something new work for a pain for which science has no answer.

She discusses:

• The lack of political will behind something so debilitating: Why is there no funding for this?
• The importance of patient advocacy and the role of the internet in sharing novel information
• The difficulty in studying a disease so unpredictable: How do you run a randomized trial when you don’t know when a cluster is going to happen?
• Why the headache community clashes with psychology
• Concerns over how to ethically combine underground and Indigenous knowledge with above-ground University research

and more! 

For links, head to the show notes page.