I posted recently on the EA forum about the Organisation for the Prevention of Intense Suffering (OPIS) initiative on access to psilocybin for cluster headaches. Our policy paper has now been published. Policy recommendations include allowing doctors to prescribe currently restricted substances such as psilocybin, LSD, DMT and 5-MeO-DALT to patients with cluster headaches and ensuring that these substances can be readily produced or imported for such medical use. It is also recommended to modify regulations to ensure that patients who purchase or possess small amounts of psychoactive substances for personal therapeutic use cannot be charged with a crime or offence.

Some of the arguments we make:

  1. Randomised controlled trials are not the only form of strong evidence in determining whether a substance is effective. Although we don't go into detail in making probability estimates, we state that "it is vanishingly improbable that the dramatic effect observed independently by so many patients was due to chance or artefact."
  2. Aside from their efficacy, psilocybin and related substances are probably safer to use than many standard cluster headache treatments.
  3. It is an imperative to alleviate extreme suffering according to any mainstream ethical framework.
  4. When standard medical options are unsatisfactory, it is entirely reasonable for a patient in excruciating pain to seek alternatives. Criminalising reasonable behaviour is unreasonable.
  5. A shift in drug policies towards general decriminalisation/legalisation would lead to harm reduction.

Our paper was co-signed by several neurologists, ethicists and other experts, including Peter Singer, Julian Savulescu, Brian Earp and David Nutt, and has been promoted by the International Drug Policy Consortium (IDPC).

In order to convey the seriousness of cluster headaches and the need for legalising access to effective treatments, we also produced a 2-minute animated video.





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Well done on this, important work and a strong set of signatories.

Thank you for this post. I just recently heard the first time of cluster headaches and OPIS work in general. It really looks promising to me. Did OPIS also look into the research for capsaicin? For example https://youtu.be/bSeYYXlH1MQ

Thanks for this link, Simon. Some cluster headache patients do report trying things like "Sinus Plumber" (which contains capsaicin), but I don't see it being widely recommended as a treatment. I'm not sure how many patient support groups are even aware of the study cited in this video, and among those patients who try capsaicin, it seems the expectation is that it might work rapidly as an abortive, rather than as a preventative following several applications. I will follow up on this with some patient groups I'm in contact with.

Congratulations! Brilliant to see a combined advocacy approach too - if you don't mind sharing, how did you go about producing the accompanying video? I'm keen to introduce more media into my own advocacy work so I'm keen to learn.

Thanks! I wrote a description of the storyboard, used my network to find an illustrator who does animation, worked closely with her to get the images right, found the right music and then edited the video myself, mainly using Final Cut.

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