Fruits of the Social Mycelium
Review of Psychedelic Outlaws (2024) by Joanna Kempner
Since its inception and global adoption, the internet has brought with it a great deal of change in human society. Some of this has been malign, but its fundamental premise of providing a space to connect people from across vast geographical distances has transformed what we once understood by the notion of community. No longer only bound by our physical locale, our interests and individual identities are now able to establish networks hitherto either impossible or incredibly slow to develop. What’s more, those networks are now able to organize and effect change in ways previously unimaginable.
One such community was established in 1998: clusterheadaches.com. The cluster headache is an incredibly painful, life-destroying condition that has received little medical attention. It is uncommon enough to make it unlikely that one would ordinarily come across another sufferer in one’s daily life, thereby exacerbating its tendency to isolate people. However, on the internet, clusterheads, as they often refer to themselves, are able to share their experiences, along with discussing the medicines and treatments they may or may not have found useful.
Joanna Kempner followed what became known as the Clusterbusters patient community for a decade between 2013 and 2023. Psychedelic Outlaws: The Movement Revolutionizing Medicine is the fruit of her research. In it, she discusses the ‘social mycelium’, a counternarrative to the nineteenth century notion of the lone, scientific genius, that mirrors the networked pattern of modern scientific discovery. It also aptly describes the underground/overground relationship of psychedelic research that began proliferating in the latter half of the last century. Clusterbusters sits neatly in this picture.
In late July 1998, a Scotsman called Craig Adams, or ‘Flash’, left a message on the cluster headaches website saying that he used small doses of LSD to treat himself. What ensued were jokes, questions, and an increasing number of discussions between posters. With LSD more difficult to come by, Adams turned to using magic mushrooms, which grew plentifully in his neck of the woods. The result was that he avoided his usual cycle of cluster headaches that fall. Other clusterheads also began having some successes; they began researching effective dosages, and sharing their findings.
This experimental underground network was essentially carrying out the work of science, albeit in a limited sense. The benefits being the speed at which they could work (outside the regulatory world) and, more importantly for those who found success with treating themselves, finding some relief after many years of suffering. What’s more, they were able to share knowledge about how to grow mushrooms themselves, thereby sidestepping the dangers of engaging with illicit drug networks. Proper citizen science. Yet, subsequent attempts to engage with ‘overground’ science proved a very different prospect.
According to Kempner, Clusterbusters ‘is helping people with cluster headaches survive a medical system that too often fails to provide adequate care.’ While science has produced several drugs and treatments over the years, a great deal is off-label, and due to a lack of research many doctors were either ignorant of correct approaches, or even in some cases quite hostile to their patient’s needs. Kempner does an excellent job at framing this within overground research processes. The Clusterbusters necessarily needed to enter this fray armed only with their anecdotal data, a category not favoured by mainstream researchers.
Kempner attended numerous conferences, and has conducted some excellent interviews, in the course of her research for this book. A central figure in the story is Bob Wold; a clusterhead and one of the principle organizers of the Clusterbusters community. Kempner writes, ‘Wold’s celebrity at Clusterbusters meetings is, at least, partly driven by the countless people who attribute their survival to his interventions, many of whom thank him for saving their lives.’ And this is important because what lies at the heart of this story is the suffering and the relief of the people involved.
Wold and others were instrumental not only in establishing the new Clusterbusters group in the early 2000s, but also in gathering and compiling all the data that they had developed thus far. It was time to venture overground, as ‘Wold knew he needed a scientist to help him develop a pharmaceutical option to reach more patients in need.’ Rick Doblin’s MAPS and several research scientists at Harvard University took up the reins—for those familiar with psychedelic history, this was the context for what became known as Halperngate, which Kempner astutely navigates.
Suffice to say that aside from a few articles, there were many false starts to this attempt at an early collaboration to get more precise, regulatory-friendly data, on the use of psychedelics to treat cluster headaches. Nevertheless, it did help to raise awareness, and promising collaborations have emerged more recently. Kempner does a fantastic job at telling this complex research element in the story, which involves strong-willed doctors and the relationship between themselves and their institutions. The measure, very often here, is the extent to which the plight of clusterheads remained foremost in their minds.
Psychedelic Outlaws is an incredibly well-written book, lucid and full of deep learning, and does an excellent job at keeping the clusterheads at the centre of its narrative. The story itself is, at turns, frustrating, heartwarming, gut-wrenching and touching. Kempner has aptly situated the Clusterbusters within the wider contexts of not only psychedelic history, but the history of science more widely. It is also, I must add, a story that is still unfolding—the sufferers of cluster headaches continue to extend their social mycelium, and fresh fruits are still popping up above ground.