An award-winning sociologist unearths how a group of ordinary people debilitated by excruciating pain developed their own medicine from home-grown psilocybin mushrooms—crafting near-clinical grade dosing protocols--and fought for recognition in a broken medical system.
Cluster headache, a diagnosis sometimes referred to as a ‘suicide headache,’ is widely considered the most severe pain disorder that humans experience. There is no cure, and little funding available for research into developing treatments.
When Joanna Kempner met Bob Wold in 2012, she was introduced to a world beyond most people's comprehension—a clandestine network determined to find relief using magic mushrooms. These ‘Clusterbusters,’ a group united only by the internet and a desire to survive, decided to do the research that medicine left unfinished. They produced their own psychedelic treatment protocols and managed to get academics at Harvard and Yale to test their results. Along the way, Kempner explores not only the fascinating history and exploding popularity of psychedelic science, but also a regulatory system so repressive that the sick are forced to find their own homegrown remedies, and corporate America and university professors stand to profit from their transgressions.
From the windswept shores of the North Sea through the verdant jungle of Peruvian Amazon to a kitschy underground palace built in a missile silo in Kansas, Psychedelic Outlaws chronicles the rise of psychedelic medicine amid a healthcare system in turmoil. Kempner’s gripping tale of community and resilience brings readers on a eye-opening journey through the politics of pain, through the stories of people desperate enough to defy the law for a moment of relief.
Sociologist Joanna Kempner unearths how a group of ordinary people debilitated by an obscure disease developed their own medicine. The problem in question? Cluster headache, a diagnosis sometimes referred to as a ‘suicide headache,’ is widely considered the most severe pain disorder that humans experience, every year a large percent commit suicide.
Several of them have grown psilocybin mushrooms—crafting near-clinical grade dosing protocols— to help deal with the pain with results. It follows, not just the group but psychedelics in general from the tangle of Peruvian Amazon to a kitschy underground palace built in a missile silo in Kansas.
4/5 While I was hesitant at first. There are many of these type of books turn into another barely disguised addiction, it pleasantly surprised me by being a very readable and well researched account of the emerging role of psychedelics in the treatment of cluster headaches.
Psychedelic Outlaws is a sobering, often distressing, look at pharmaceutical development and protocol approval by Dr. Joanna Kempner (PhD in sociology and healthcare policy). Released 4th June 2024 by Hachette, it's 384 pages and is available in hardcover, audio, and ebook formats. It's worth noting that the ebook format has a handy interactive table of contents as well as interactive links.
This is a layman accessible, fascinating, and often frustrating examination of a group of patients with cluster headaches on their search for relief from their chronic pain. The pharmaceutical research system is absolutely set up to be completely outside practicality for small/single/individual researchers (however legitimate and well meaning) in order to winnow out the charlatans and "snake oil" salesmen. It's expensive, eye-wateringly expensive, to research and bring a drug to clinical trials and eventually to market.
This book is written as a human interest history about a group of cluster headache sufferers (aka "suicide headaches" for the brutal pain they cause) who found one another online and eventually banded together to find treatments in a system they felt abandoned by and to advocate for research.
Not written in impenetrable academic style, the book is well annotated throughout, and the chapter notes, bibliography, and references will provide readers with many hours of further reading. It's good that it's not written as a "gotcha" story, but it does take a frank look at the sometimes unfair treatment of smaller groups of sufferers who are nonetheless in desperate need of healing.
Five stars. Highly recommended for science/nonfiction readers, as well as for public library acquisition, or possibly gift giving to someone touched by chronic medical issues.
Disclosure: I received an ARC at no cost from the author/publisher for review purposes.
I very much enjoyed what Kempner had to say and how she said it: she paid attention to intersectionalism and made it a point to examine how experience differs across a spectrum. This fit very well with the podcasts The Retrievals, seasons 1 &2, which I have been listening to. I thought the areas on academics and clinical research were good and helpful to the majority of people who don't work in either.
I want to think more about what lessons this story has to offer on citizen science and the power of a relatively small group of individuals to drive systemic change.
But this week I'm mostly thinking about pain and why medicine too often ignores it.
Psychedelic Outlaws follows a fascinating group of people affected by cluster headache, the most painful condition known to medicine. Based on self-reported successes in using psilocybin to prevent or abort these horrific attacks, these citizen scientists formed a legit non-profit to share their journeys. By making enough noise and taking no crap, Clusterbusters has successfully partnered with Yale University to research the methods they created over years of real world experience and data-collecting.
The 20-year jump from cluster headache message boards to working with a prestigious university to legitimize not only their disease, but also the life-changing effects of psilocybin has been a long and interesting trip. Egos and self-interest from researchers and the NIH have side-lined progress for years, while people continue to suffer and commit suicide at MUCH higher rates than the national average.
The book also gives a mind-blowing history of synthetic psychedelics, such as LSD, the government’s involvement and human exploration of the drug and the ultimate ban of these substances, despite the promising health benefits.
The citizen scientists who have chosen to work underground to find ways to treat themselves have clearly been failed by a medical system that is supposed to care FOR them. It’s truly a remarkable story about how these psychedelic outlaws have forged their own path to bring attention to their disease and bring their psychedelic medicine aboveground.
“I received a free copy of PSYCHEDELIC OUTLAWS as part of a review program, but my review is independent and my opinion is my own.”
Psychedelic Outlaws follows a fascinating group of people affected by cluster headache, the most painful condition known to medicine. Based on self-reported successes in using psilocybin to prevent or abort these horrific attacks, these citizen scientists formed a legit non-profit to share their journeys. By making enough noise and taking no crap, Clusterbusters has successfully partnered with Yale University to research the methods they created over years of real-world experience and data-collecting.
The 20-year jump from cluster headache message boards to working with a prestigious university to legitimize not only their disease, but also the life-changing effects of psilocybin has been a long and interesting trip. Egos and self-interest from researchers and the NIH have side-lined progress for years, while people continue to suffer and commit suicide at MUCH higher rates than the national average.
The book also gives a mind-blowing history of synthetic psychedelics, such as LSD, the government’s involvement and human exploration of the drug and the ultimate ban of these substances, despite the promising health benefits.
The citizen scientists who have chosen to work underground to find ways to treat themselves have clearly been failed by a medical system that is supposed to care FOR them. It’s truly a remarkable story about how these psychedelic outlaws have forged their own path to bring attention to their disease and bring their psychedelic medicine aboveground.
4-star substance, 2-star writing. Very interesting history of psychedelics with attention to serendipity in drug discovery, cultural appropriation of indigenous practices, economics of drug development, politics of science, and more. Main connecting thread is the activism of a group of cluster headache sufferers who organize to collect their own pilot data on psilocybin as a treatment and sort of bottom-up rally physician scientists to take the baton and do more formal research to legitimize the method in establishment eyes.
Downside for me was just slogging through the writing. Never lets you forget whose side she's on in any dispute or disagreement over best way forward, repeats herself quite a bit, raises and drops threads (e.g., makes a good point about difficulty of devising a convincing placebo for psychedelics, but later reports results of placebo-controlled trial without addressing whether the attempt to double-blind was successful), and indulges in numerous mushroom metaphors, ex:
"...But I often wondered if too much gratitude behave like the dense forest canopy that, for so long, obscured the indispensable mycelial network below, by blinding Clusterbusters [the group of headache sufferers/activists] to their own significant contributions to the field of research: an invaluable cyberbotanical wisdom that taught the rest of us how indole-structured substances like psilocybin and LSD could be used as a treatment for headache disorders" (p. 218).
I wish the title or subtitle of this book were more descriptive of its scope, because it ends up being more narrowly focused than I expected. It reads like one cohesive journalistic investigative report specifically about how a very small group of people experiencing a rare kind of extreme physical chronic pain have come to use mushrooms and LSD to alleviate their symptoms, literally saving their lives (since cluster headaches - the focus of the book - drive many who suffer them to suicide). Regardless of what it does or does not cover, this is a very good piece of pop science and contemporary journalism. It repeatedly addresses the aspects of colonialism, theft, white dominance, and unbalanced impacts on Black, Brown, and Indigenous people and other People of Color when dealing with these substances.
Psychedelic Outlaws is an amazing read about the state of the U.S. healthcare system and the failed "War on Drugs." The author takes us through the history of psychedelics from its indigenous roots right up to the "shroom boom" of the 2010s. The book follows leaders in the headache community who have cluster headaches—a devastating condition with surprisingly effective (albeit illegal) treatments, psilocybin mushrooms and LSD. The author tells us their trials and successes in funding psychedelic research and pushing for its reclassification. Anyone interested in books about health and psychedelics will LOVE this book.
This book wasn't what I was expecting in a good way.
Getting through the Part I was a bit of grind; however, as I read into the later chapters and eventually finished the book, I realized and appreciated the mycelium threads Kempner was growing with her research.
I think my favourite chapter was "The Fall" in Part 2 (and I don't want to share any spoilers).
This book is an essential read for anyone interested in learning how drugs fail or successfully come to prescription market and the challenges with bringing psilocybin to the "above ground".
Although I don’t have a scientific background, I found the writing engaging and accessible. It opened my eyes to the intense, often invisible struggle faced by chronic headache sufferers, and I felt the book effectively exposes systemic barriers within healthcare research and regulation. My only critique is that the title and subtitle promise a broader exploration than what’s delivered - the core narrative focuses largely on cluster headache sufferers and the Clusterbusters community. Still, it’s an insightful and thought-provoking read.
A fascinating, detailed history of a community trying to help themselves after the medical community failed them. This was an inspiring read. The author clearly went through painstakingly detailed research to be able to tell this story and it shows. I’m so glad the book fell into my hands and I was able to read it.
Interesting concept of people with cluster headaches having found a cure with psychedelics and not being able to have above ground people help them validate those findings.
Agree that analogy about mushroom interconnectedness was overwrought.
This entire review has been hidden because of spoilers.
I just finished the last page of Joanna Kempner's book Psychedelic Outlaws. A tear is still rolling down my cheek (not something that happens often at all). Words can't express the magnitude of this book, of this life, of this organization called Clusterbusters. I've been attending book club and the book was divided into 4 parts. I'm not going to lie, Part 3 had me wanting to bang my head against a brick wall. It was such a heavy weight to read each word with all the bickering and nonsense going on when there were patients suffering.
I have loved learning the history of clusterbusters, psychedelics and all the people that have shaped this story. Living with cluster headaches has been difficult, but this organization has saved my life. I just wish the path to helping others like me could have been paved rather than as rocky as it has been- but this book shows we are resilient.
I took a deep breath, sat down today, finally finished the last few pages of part 3, and moved on to part 4. Dr. Schindler is an amazing soul and it was captured so well in this book why she has made such a difference in our community.
I will carry this book with me, and when people ask me what I do, I can show them this book- this is what I do - the work never ends, it just continues and shifts. There are still many people out there with cluster headache that are undiagnosed, misdiagnosed, unable to get an oxygen supplier to fill their script for oxygen, insurance refuses to pay for oxygen, Emgality, or other prescription medications and psychedelics are still schedule 1. If you believe they should be schedule 1- I encourage you to read this book, then decide. People suffering need access to whatever works - they need access now. Later may be too late.
An insanely infuriating account of how big Pharma companies lobby against safe and effective treatments for some chronic illnesses for the sake of profits.
It's nothing new, but it is always frustrating to witness just how broken the system can be when a potentially tremendously effective medication is classified as a Schedule 1 drug in the US while people are suffering daily from entirely treatable conditions.
I hope that I may one day live in a world where science informs the government's decisions, instead of lobbies.
Fantastic book about cluster headaches, the history and politics of psychedelic medicine, and broader conversations about who benefits from participatory research.
If you know someone with cluster headaches, this is a must-read. If you have never heard of them, it is probably even more important! My dad has cluster headaches, so the portions profiling patients were difficult to read, but also felt validating to the ways I've seen him suffer and battle this disease.
As a researcher, the sections about disregarded and exploited "underground patient research" (self-experimentation) were convicting. Cluster headaches can and should be a case study for other research areas to ensure we prioritize the well-being of people over research gains, publications, scientific progress, or other arbitrary measures of success in academia.