PT546 – Psychedelic Outlaws: Cluster Headaches, Citizen Science, and the Story of ClusterBusters, with Joanna Kempner, Ph.D.
Sep 10, 2024
auto_awesome
Joanna Kempner, Ph.D., is an associate professor at Rutgers University and the author of 'Psychedelic Outlaws.' She delves into the groundbreaking work of ClusterBusters, a nonprofit exploring psychedelics' potential to alleviate cluster headaches. The conversation highlights the lack of funding for these urgent medical needs and the vital role of patient advocacy. Kempner also discusses the innovative use of internet communities for sharing knowledge and the community's strength in finding hope and healing amidst chronic pain challenges, all while navigating ethical dilemmas in research.
Psychedelics like psilocybin and LSD show potential in treating cluster headaches, despite their stigma and legal challenges.
The cluster headache community thrives on emotional support and shared experiences, creating bonds that aid in healing beyond medication.
Ethical concerns arise from the intersection of underground knowledge and academic research, emphasizing the need for responsible practices in patient advocacy.
Deep dives
Understanding Cluster Headaches
Cluster headaches are recognized as one of the most painful conditions a person can experience, often described as more severe than labor pains or gunshot wounds. Unlike migraines, which affect a larger population, cluster headaches are rare, impacting approximately 300,000 Americans. Patients endure attacks that last between 15 to 180 minutes and may occur multiple times daily, leading to a cycle that can span weeks to months before remission. This intense pain often correlates with a high rate of suicidal ideation among sufferers, highlighting the urgent need for effective interventions and understanding.
The Role of Psychedelics in Treatment
Psychedelics like psilocybin and LSD have emerged as potential treatments for cluster headaches, with anecdotal evidence and patient testimonials supporting their effectiveness. The phenomenon spans decades, with patients finding relief through self-medication, despite the legal and stigma barriers surrounding these substances. The underground community has played a pivotal role in advocating for the use of psychedelics to manage their excruciating symptoms, often sharing experiences and knowledge online. This grassroots initiative has sparked a broader discussion about patient-led research and the importance of addressing pain management through unconventional routes.
Challenges in Medical Recognition
One significant issue faced by individuals suffering from cluster headaches is the difficulty in obtaining a proper diagnosis, which can take an average of five years. Many patients report being misdiagnosed or passed off as drug-seeking by medical professionals, leading to feelings of isolation and frustration. The stigmatization of headache disorders, compounded by a lack of understanding within the medical field, leaves many sufferers feeling hopeless. As a consequence, patients often turn to alternative communities, seeking support and solutions outside traditional healthcare systems.
The Importance of Community Support
Patients within the cluster headache community often rely on each other for support, sharing experiences and strategies that vary from pharmaceutical treatments to the use of psychedelics. The connections forged in these spaces are not just about medication but significantly contribute to emotional healing, providing individuals with a sense of belonging that their medical experiences often lack. This communal healing is highlighted in meetings where individuals connect for the first time, finding validation and understanding among peers who face similar struggles. The role of community is seen as vital for maintaining hope and promoting resiliency against the challenges of chronic pain.
Ethical Dilemmas in Research and Patenting
The intersection of underground and above-ground research in psychedelics brings forth ethical concerns, particularly regarding knowledge sharing and patenting practices. Many breakthroughs are rooted in community knowledge, yet there are fears that universities might exploit this information without proper acknowledgment of its origin. An emerging conversation around responsible research practices is vital to ensure that underground contributions are credited fairly and not appropriated for profit. This tension underscores the need for clearer guidelines in how academic institutions engage with patient-led advocacy groups and the research conducted within these communities.
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