Why suspicious? The fact that DMT aborts cluster headaches is a pretty recent discovery. The word is just beginning to spread among sufferers. And there are very few researchers working on this topic, and very little funding generally, and it can be pretty difficult to get all the permissions needed to run trials using psychedelics. (I wouldn’t be surprised if Schindler’s group at Yale was running the DMT survey as a preliminary step to justify running a proper trial. Note that Schindler “is believed to be the only researcher in the United States studying psychedelics in headache disorders.”)
This report from 2006 has similarly high numbers of surveyed people saying that psilocybin or LSD aborted their headaches https://pubmed.ncbi.nlm.nih.gov/16801660/ That’s 19 years for someone to do a controlled trial of cessation of cluster headaches using psilocybin or LSD vs placebo or triptan control. Wouldn’t have to very big numbers either if the anecdotes are to be believed.
I guess your theory is that there have been too many funding and legal blocks to get this done in that 19 years. Seems hard to believe. Terrible if true.
If it is true, would recommend you focus on this as your core advocacy point: we need a placebo-controlled cluster cessation trial of psychedelics (rather than just prophylaxis). Saying “The Best Treatment for the Most Painful Medical Condition Is Illegal” is an unproven statement and makes you seem unserious
I understand it seems hard to believe! And yes, I’m motivated to support / advocate for RCTs and I’m developing various ideas with some collaborators (not just involving psychedelics). I agree that more data published in peer-reviewed journals is very much needed.
The documented barriers to psychedelic cluster headache research reveal systemic failures across every institution that might otherwise advance treatment. Schedule I classification adds years to research timelines. NIH has invested almost nothing in cluster headache specifically. Pharmaceutical companies see no return in treatments requiring only three doses annually. Academic institutions impose unique scrutiny on psychedelic protocols. Patient recruitment struggles with rarity, episodic presentation, and placebo reluctance.
The BOL-148 story crystallizes the tragedy: a non-hallucinogenic compound showed unprecedented efficacy in 2010, yet required 13 years to enter Phase 1 trials because it fell between orphan drug and commercial viability. As Bob Wold observed: “You can’t introduce transformative medicine into a broken healthcare system.” The gap between patient discovery in 1998 and the current state of research—with perhaps one dedicated US researcher and trials measured in dozens of participants—represents what Halpern called “a process that has begun 40 years too late.”
Why suspicious? The fact that DMT aborts cluster headaches is a pretty recent discovery. The word is just beginning to spread among sufferers. And there are very few researchers working on this topic, and very little funding generally, and it can be pretty difficult to get all the permissions needed to run trials using psychedelics. (I wouldn’t be surprised if Schindler’s group at Yale was running the DMT survey as a preliminary step to justify running a proper trial. Note that Schindler “is believed to be the only researcher in the United States studying psychedelics in headache disorders.”)
This report from 2006 has similarly high numbers of surveyed people saying that psilocybin or LSD aborted their headaches https://pubmed.ncbi.nlm.nih.gov/16801660/
That’s 19 years for someone to do a controlled trial of cessation of cluster headaches using psilocybin or LSD vs placebo or triptan control. Wouldn’t have to very big numbers either if the anecdotes are to be believed.
I guess your theory is that there have been too many funding and legal blocks to get this done in that 19 years. Seems hard to believe. Terrible if true.
If it is true, would recommend you focus on this as your core advocacy point: we need a placebo-controlled cluster cessation trial of psychedelics (rather than just prophylaxis). Saying “The Best Treatment for the Most Painful Medical Condition Is Illegal” is an unproven statement and makes you seem unserious
I understand it seems hard to believe! And yes, I’m motivated to support / advocate for RCTs and I’m developing various ideas with some collaborators (not just involving psychedelics). I agree that more data published in peer-reviewed journals is very much needed.
I still genuinely believe that the funding and legal barriers are very difficult to overcome (plus other barriers). A good resource on this topic is the book Psychedelic Outlaws (describing the history of psychedelic use and research for CH). This deep research by Claude may also provide useful context: Why psychedelic research for cluster headaches has stalled despite decades of patient evidence. It concludes: