What psychedelia can learn from Clusterbusters

Is its community health model replicable?

Clusterbusters annual gathering

You probably know some of the big names in psychedelic research: Robin Carhart-Harris, Matthew Johnson, Rick Doblin, Roland Griffiths, Rachel Yehuda, David Nutt and so on. They get millions in funding, advisory positions to psychedelic companies, keynotes at conferences, appearances on Netflix or before Congressional hearings, and the adulation of thousands of psychonauts. But have you heard of Flash?

Flash is an anonymous Scottish man who was the first person to try psychedelics as a treatment for cluster headaches, on himself. He was working as a drug dealer to support himself through university, and decided it was ethical to try his products before selling them. He discovered that taking LSD cleared up the excruciating agony he experienced through cluster headaches and kept him headache free for months. When he stopped taking psychedelics occasionally, the unbearable headaches returned. He experimented, discovered the occasional psychedelic experience – both LSD and psilocybin – kept him headache free. He also discovered that a low dose – enough to feel good but not enough to have a big trip / mystical experience – was sufficient for the headache-busting effect. This ex-drug dealer had basically stumbled on the best available medicine for an illness that drives many people to suicide.

Most people would keep that discovery to themselves. But Flash is an anarcho-socialist Scot with a strong moral compass, and he felt obliged to share this information with others, thereby putting himself in some legal risk. He posted his finding on a noticeboard for cluster headache sufferers on July 28, 1998:

 “I use small doses of LSD to treat cluster headache.”

Flash made further occasional posts, including sharing how easy it is to grow one’s own magic mushrooms and prepare a low-dose tea sufficient to keep the cluster headaches at bay. Gradually, over the months and years, others followed his advice and found similar incredible results .  Joanna Kempner, in her wonderful new book, Psychedelic Outlaws, writes:

a woman named Stace* posted a message extolling the life-saving powers of psychedelic mushrooms. Just existing, she explained, had been bleak for a long time, but it became unbearable when the attacks stopped going into remission. Nothing the doctor prescribed worked, and the relentless pain had taken a toll on what she’d once considered a full, active life. The previous week she had brewed some mushroom tea— “The BEST TEA I HAVE EVER HAD!”— and drank it just as she was getting an attack. It reduced the pain of “a potential 8 to 10 (kip) . . . in thirty minutes.” But most importantly, she hadn’t had any pain since. “It’s been a week— the best week of my life! I am happy, my boyfriend is happy, my job isn’t quite so bad anymore, and even my dog has noticed the difference. What can I say? I owe it all to you guys!!!! THANK YOU!”

One of the people to discover that psychedelics can treat cluster headaches was Bob Wold, a family man who works in construction.  He’d never tried any illegal drugs before, but had a first trip watching the fireworks on the 4^th of July. He didn’t instantly convert to a New Age shaman – instead, he and others discovered a low barely-psychedelic dose was enough to keep the headaches in remission, while also making one feel good, like after a couple of beers.

Wold decided those interested in developing psychedelics as a treatment for the condition should have their own organisation and network. Clusterbusters was born on August 4, 2002.  Wold sent a few others the founding email:

Hello fellow clusterheads and keepers of the flame! Welcome and thank you for joining us here. This message board and email service has been started to join together people interested in advancing psilocybin and related therapies, for cluster headache. Our purpose here is to take a proactive role in researching the treatment, spreading the word, and beginning the long road to acceptance of the treatment as a “legal” way for people to treat their headaches

Professor Kempner ‘s book, Psychedelic Outlaws, tells the inspiring story of this life-saving movement, and also the story of its difficult attempts to get psychedelics accepted as a legal medical treatment.

Balancing safety and accessibility

One of the crucial questions for psychedelics’ integration into western culture is how to balance accessibility with safety. There is a huge debate going on over who should be qualified to facilitate psychedelic experiences, and what sort of training they need, in order to be safe and competent , especially when it comes to mental problems like PTSD.

Some say only trained psychotherapists and / or psychiatrists should be working with vulnerable populations. Others say that ends up making the treatment unaffordable ($10,000 or more) and non-therapists should be able to facilitate as well.

There are now, by one estimate, around 150 psychedelic facilitator training courses, and the vast majority are open to non-therapists, often coaches or self-certified healers, who then offer their services on Instagram and work in the underground, claiming they are certified and fully-trained facilitators. There’s even people offering eight-week courses in psychedelic therapy for PTSD – as I wrote about last week.

My bias is more towards safety than accessibility, because I’ve experienced how psychedelics can cause new and much worse problems lasting months or years, and I get contacted by people saying ‘I tried psychedelics for my depression / PTSD – I had no idea I could end up feeling worse’.

At the same time, if someone is desperate and suicidal, of course they should be able to try psychedelics, as quickly and safely as possible. The healthcare system is broken, the FDA approval system is slow and very expensive…and people can sometimes heal themselves outside of the medical system. When I experienced post-psychedelic PTSD, my recovery started thanks to a peer support group, where we self-practiced Cognitive Behavioural Therapy.

HOWEVER, when people are suffering from serious mental health problems and they turn to underground psychedelic facilitators (or even overground) they run the risk of being preyed on by the unscrupulous, or hurt by the incompetent. I hear many stories, every week, and you cannot over-estimate the level of negligence you come across in the underground, I’m afraid - which is not to say there are not wonderful and ethically responsible healers out there as well.

Clusterbusters is a really interesting example of a peer support group which manages to find a balance between safety and accessibility. It seems a pretty safe community in how it educates its members on the safe use of low dose psychedelics to treat their headaches.

But Kempner’s book also shows quite how hard it is to take an underground treatment and turn it into an FDA-approved legal medicine. We’re all aware of that this month, after an FDA advisory committee poured cold water on Lykos’ attempt to get MDMA-assisted therapy approved for PTSD.

Worse than a gunshot wound

So what are cluster headaches? They’re little researched, very often misdiagnosed or not diagnosed at all, and poorly treated. They affect about 1% of the population. They are really horrible to experience, worse apparently than a gunshot wound:

Clusterbusters funded a groundbreaking study— the largest that had ever been conducted on the disease. Researchers asked 1,604 individuals to rate the severity of their headache attacks on a scale of one to ten and indicate whether they had encountered other forms of pain. Those who said yes were asked to rate those as well. Ratings on this scale included

Stab wounds: 4.6

Migraine: 5.4

Gunshot wounds: 6.0

Kidney stones: 6.9

Pancreatitis: 7.0

Unmedicated labor: 7.2

Cluster headache: 9.7

(Yes, this survey included twenty- five people with cluster headache who had survived a gunshot wound and another sixty- seven with cluster headache who’d been stabbed.)

Treatments are not great – oxygen from an oxygen tank for example. Sometimes doctors give up:

One Clusterhead told me about the time when his doctor, probably frustrated that none of his prescribed treatments were working, had essentially advised him to kill himself. “Well,” the doctor had said, “you know the only cure is a .357.” The Clusterhead recounted, “I thought for a minute. And I went, ‘Jesus.’ I looked at him and he looked away. And I said, ‘Are you saying the only way for me to find relief is to blow my brains out?’ And he said, ‘That’s the way it is.’ And I said, ‘You don’t want me to come back, do you?’ He said, ‘Well, you know, you’re not getting better. We like to see people get better.’”

That comment puts the Canadian Medically Assisted Dying programme in perspective, as a side note. ‘We like to see people get better, you’re not getting better, maybe it would be better if you died’.

Clusterbusters instead developed its own protocol, which it shares with all members:

Clusterbusters’ website provides guidelines on how to bust effectively while minimizing risk of harm. Busting, according to their guidelines, is an all- purpose tool. It can end a cluster headache cycle, prevent a cycle, and/or abort a single attack. Most individuals find relief through a regimen of three “low- dose” psychedelics administered five days apart. Unlike a microdose, which is subhallucinogenic and shouldn’t cause noticeable effects, a low dose induces a mild euphoria. Bob Wold likens this sensation to the relaxed feeling of a “two- beer buzz.” “Expect very blue, blue skies. Your favorite music will sound better than ever, [and expect a] smile on your face for 4– 5 hours.”

A key part of the treatment, Joanna Kempner thinks, is the community that Clusterbusters also provides:

People, like trees, require a broad network of support for survival. Clusterbusters offers this kind of support by providing education, building community, offering peer support, and advocating on behalf of patients’ interests. They’ve been building a parallel set of offerings through MigraineBusters. Both websites offer information on how to bust— their term for using psychedelics to treat headache disorders.

Joanna – who herself suffers from migraines and wrote her previous book on that – went to Clusterbusters’ annual gathering and loved the people she met

After hearing enough heart- wrenching stories, I finally began to understand why people come to Clusterbusters. They’re refugees. They aren’t here to find alternatives to medical care so much as they have arrived only after just managing to narrowly survive medical care

Almost as soon as Clusterbusters was founded in 2002, they began the long walk to try and get psychedelic treatment medically researched and FDA approved. One Clusterbuster wrote:  

All the lobbying in the world won’t help unless we can show the bureaucrats and legislators this is the real deal. We need physicians, neurologists especially, to make a credible case. We need official research clinical trials. . . . So first we have to convince the doctors something real is going on here with these magic mushrooms.

To which Bob Wold replied:

I tried to get someone to bring up the subject [of psilocybin] at a [professional headache conference] last year. The problem there, I was told, is that most of these meetings are sponsored by pharmaceutical companies. Paid airfare . . . hotel rooms etc. Try bringing up something that isn’t going to make anyone any money . . . for years . . . and could hurt sales. . . . You would never be invited to a conference again.

Nonetheless, in 2004 Wold got in touch with Rick Doblin of MAPS, who put him in touch with two researchers at Harvard University’s McClean Hospital – John Halpern and Andrew Sewell. There was hardly any psychedelic research happening in western academia at this point, so it was very exciting that Harvard was on board.

The perils of overground academic science

Clusterbusters raised some funding from its own members for the initial study, which was a collection of case reports from its members on how LSD and psilocybin helped them achieve remission from cluster headaches. The first reviewers of the paper by Sewell were extremely sceptical:

Reviewer One decided to visit Clusterbusters’ website and “was aghast to find collaborators named ‘Flash,’ ‘Pinky’ and ‘Erowid’ . . . and psychedelic pictures of mushrooms.” Any medical journal editor would do the same and“have a good laugh.” Reviewer Two “suggest[ed] that we had been duped by a bunch of acid- heads intent on pressing their own agenda.” At least, Sewell added, Reviewer Three had enjoyed the paper.

Sewell recommended that the next draft downplay or even “sever as many ties with Clusterbusters as possible.” He asked Wold, “How would you feel about moving your name from the list of authors down to acknowledgements?”

Kempner points out that a community health initiative was presented in the paper as a simple drug intervention:

By presenting a simple count of how many people found relief using psilocybin or LSD, the paper implies that the social context of their experiments had no relevance to the effectiveness of the therapy. But how can we know if this is true? This had been a collective self- experiment, conducted with the support and encouragement of an online forum. How much of the magic was in the drug, and how much was in the setting? Excluding Clusterbusters doesn’t just deprive them of the credit they deserve for their work. It also made the results of the study less objective and more difficult to interpret.

This brings us to what is in many ways the central point of her book:

Contemporary psychedelic research is fueled by an alchemic process of transforming a community’s hard- earned knowledge into the commodities that academics care about: peer- reviewed publications, research grants, and the kind of fawning profiles in popular magazines that even those considered “stars” of academia rarely enjoy.

Aboveground psychedelic research depends on the participation, experience, and wisdom of the underground – which it turns into ‘scientific fact’ and into funding and eventually, sometimes, wealth from patented medicines. But the underground is often deleted from that process.

It’s a tricky process, however, because if the aboveground scientific research seems too affiliated with the underground, it raises questions of credibility – this arguably affected Lykos in its FDA Advisory Committee debacle.

So research has to be seen to obey the rules of aboveground academic science. But there is also a code of the underground, and sometimes researchers can be seen to have broken that as well.

Kempner tells the extraordinary story of what happened at a 2006 conference in Basel for Albert Hoffman’s 100^th birthday. John Halpern was giving a talk about one of the first trials in the renaissance, when a member of the audience called Mark McCloud (an activist who makes blotter art and features in Erik Davis’ new book) accused Halpern of being a DEA snitch who had helped get Leonard Pickard imprisoned.

Most awkward conference experience ever:

What really happened with ‘Halperngate’? Kempner writes:

According to multiple media reports, Halpern and Pickard met in the mid- 1990s in New Mexico when Halpern volunteered as a medical resident for Dr. Rick Strassman. Pickard had traveled to Albuquerque to “do drug research.”

Halpern, according to reports, was not in good shape when the two met. Pickard found him crouching in a dark corner of a mutual acquaintance’s home, lost in a terrifying ayahuasca trip. Pickard, reportedly, reassured the young man that he’d done “more LSD than anyone on the planet and could guide him to a more peaceful place. The two men were the best of friends by the time Halpern sobered up.

At some point in their relationship, Pickard allegedly paid Halpern a huge chunk of cash in exchange for arranging a meeting with a wealthy childhood friend who could launder his drug money. Five years after Halpern’s fateful meeting with Pickard, the feds found a drug lab in a former missile silo in Kansas, which had been renovated into an extravagant, kitschy, underground palace.

Allegedly, Halpern cooperated with the DEA and that played a role in Pickard’s conviction and imprisonment.  This led to a 2006 article by John Hanna outlining ‘Halperngate’, to which Doblin replied, giving his reasons to continue working with Halpern.

Doblin’s reply began by clarifying that he did not take snitching lightly, and that he believed in “accepting whatever punishment may unfortunately come one’s way for being involved [with] . . . illegal drugs,” but he also believed in “forgiveness and redemption.”

There was also a larger politics at stake that needed to be kept in mind. Halpern offered the only viable path Doblin had to get to Harvard— the kind of symbolic victory that would signal “the beginning of the post- Leary era,” which he argued that everyone in the community should agree was an important goal.

In any case, Pickard reportedly did not blame Halpern for his imprisonment.

Hanna, however, argued that Pickard’s opinion didn’t matter. Consider, for example, that Halpern had been accused of wearing a wire to record his conversations with some of the most beloved people in the psychedelic community, including underground chemist Sasha Shulgin. Nobody knew if it was true, but, he argued, in a “community of outlaws . . . trust is the most precious commodity.”

Halpern denies the accusations. Nonetheless, he was seen to have broken a code, and he became persona non grata in the underground, including with MAPS funders. He was reportedly ‘banned from Burning Man’. This unfortunately affected Clusterbusters’ attempts to push forward their research, as it affected MAPS’ ability to continue funding their study with Halpern. It also exacerbated an acrimonious fall-out between Andrew Sewell and John Halpern – they came to really hate each other, as only academics working in the same field can.  Can academic feuds obstruct research agendas? Just think of Howard Lotsoff and Deborah Mash in ibogaine research, or Roland Griffiths and Matthew Johnson in psilocybin research.

Halpern started to study a non-psychedelic treatment which was more patentable. Sewell died tragically young. And the treatment never made it near to FDA approval. There’s been another more recent attempt by multi-millionaire Carey Turnbull to fund Clusterbusters’ research, but he apparently couldn’t raise enough funding. Getting a new drug FDA approved takes several million dollars, and cluster headaches do not affect a big enough demographic to make it a money spinner. In addition, they’re hard to study as its unpredictable when they’ll occur, and a randomised controlled placebo trial is asking people in the control group to experience the worst pain imaginable, for the sake of science…

That’s unfortunately where the story has got so far. Maybe Joanna’s book will help attract new philanthropists to the effort. And the inspiring part of the story is this is a citizen science network that found something that works, something that saves people from suffering and suicide, in a way that is safe and accessible. And a bit of good news that happened last week – Health Canada approved the first special exemption for the use of psychedelics for a sufferer of cluster headaches.

Is the Clusterbusters model replicable?

As a community health model Clusterbusters reminds me a bit of the Dallas Buyers Club (an underground peer support group helping AIDS sufferers get medicine). Perhaps it is replicable, for communities of illness like, say, long COVID sufferers. In Europe, countries have experimented with the social club model of regulation for cannabis, and maybe something similar could be tried for psychedelics.

However we should note – Clusterbusters found that a low dose is sufficient for their treatment. This makes their intervention a lot safer than interventions that might require high doses. And their illness seems to be physiological, so there are not the vulnerabilities that exist with sufferers of psychological illnesses like PTSD. I asked about adverse events / bad trips etc and they don’t seem to have been an issue, as far as I can tell.

It's notable that Clusterbusters hasn’t become at all culty, Bob Wold hasn’t started wearing a kaftan, calling himself Baba Bob, and telling followers the True Cure for suffering involves sleeping with him. This is no doubt thanks to Wold’s character but the group may have resisted cultiness as well because it is using low doses. Higher doses = more mysticism and perhaps a community more liability to cultiness.

So maybe it isn’t that replicable. But you could learn a few basic things they seem to have got right that other community health groups could explore:

1) No charismatic leader who is seen as more advanced than the rest of the group.

2) Open source protocol

3) Community support online with annual get-togethers

4) Not for profit.

5) Low dose? If a low dose can stop cluster headaches, what other benefits can they bring for other illnesses?

After the paywall, a conversation with Joanna Kempner, where she describes what inspired her about Clusterbusters, and what she thinks about the contemporary psychedelic renaissance.

Subscribe to hear our conversation and access a lot more content eg all our Psychedelic Safety Seminars. The next one of which is on July 11 by the way, free tickets here.