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.
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.
So, results of the small-scale migraine study I mentioned above were actually published in June and showed a significant effect of psilocybin on migraines. "Preliminary Analysis of the Sustained Effects of a Single Low Oral Dose of Psilocybin in Migraine Headache", https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13854 The results were also shown at a cluster headache conference I spoke at over the weekend: a single low dose of psilocybin cut migraine frequency in half. Pretty encouraging!
My guess is that it's indeed mainly the stigma of illegal drugs and not wanting to lose credibility as an organisation by promoting alternative treatments from that category that haven't been approved. Probably not status quo bias as there's enthusiasm about new official treatments. Some cluster headache patients themselves may be reluctant to try illegal drugs, but desperation and the encouragement of other patients in the community reduce the psychological barriers.
Thanks! There is actually an RCT for psilocybin in migraines as well, being conducted by the same Yale researcher, Emmanuelle Schindler - results should even be presented this month, I believe. Migraine patient associations are larger and have more clout, so I expect positive results to get traction and make talk of psilocybin and other controlled substances more mainstream. Until now, migraine organisations and even one major cluster headache association (OUCH) tend to avoid talk of controlled substances.
OPIS is an EA-associated think-and-do tank focused on the prevention of intense suffering as an ethical priority (https://www.preventsuffering.org/). We are addressing a few specific causes of suffering and, at a more meta level, working to promote compassionate ethics in governance.
One of our main current areas of focus is cluster headaches, a form of trigeminal autonomic cephalalgia and one of the most painful conditions known to medicine, often driving patients to suicide (https://www.preventsuffering.org/cluster-headaches/). The agony they cause is often compared to having a red hot ice pick driven though the eye into the brain. Attacks typically last one hour and repeat several times a day. Patients are often woken up several times during the night by attacks, and they go to extremes, including banging their head against the wall and punching their head, to try to distract themselves from the severe pain. About 85% of patients have episodic clusters lasting 1-3 months, occurring once or twice a year at the same time of year, during which they have daily recurrences at the frequency mentioned; the other 15% have chronic clusters that can last for years, often with multiple attacks per day and without a single day's break. Although they only affect about 1 in 1000 people, the severity of the pain dramatically increases the scale of the problem.
A large number of patient reports attest to the efficacy of certain indoleamines and related compounds with hallucinogenic properties, including psilocybin, LSD and DMT, both in aborting attacks and in preventing entire episodes. Research reports based on survey results indicate that these compounds can be more effective than standard medical treatments, which are far from satisfactory. But legal restrictions and lack of sufficient information among doctors and patients mean that patients often suffer needlessly.
OPIS is working to improve access to effective treatments through an initiative to change government regulations in some key countries, and improve the information available to patients and doctors.
I propose to give a brief talk about the ethical priority of treating extreme pain, and provide more details about this specific condition and how we are tackling the subject and the challenges faced. I hope to inspire more EAs to consider supporting or becoming active in this and related cause areas.
Apologies for replying only now. We are happy to dedicate funds to a specific cause area when requested, such as advocacy for pain relief, which in any case represents much of our current focus. Even more general advocacy to promote the ethic of non-suffering in policy-making and decision-making invariably puts much of the emphasis on human suffering and pain relief.
There are clearly differences in how people respond to opioids, both in terms of efficacy of pain relief and severity of side effects, and for some chronic pain patients there are other treatments that may be preferable. But for a substantial fraction of chronic pain patients, opioids appear to be the only medication that is sufficiently effective, justifying any side effects. Note also that these Cochrane studies refer only to non-cancer pain, whereas for terminal cancer patients - one of the main categories of pain patients addressed by the Lancet study - side effects that affect daily functioning may be even less important than pain relief.
JC, thanks a lot for your comments. The short article I linked to summarised the situation but you’re right that it doesn’t provide additional sources. I would, however, maintain that much of the concerns about opioid misuse do come from the US, even though the context is different, which is why it is so important to show the weakness of the arguments made linking justified prescriptions and misuse. Two white papers by the Alliance for the Treatment of Intractable Pain are useful and contain many references:
Also this article by noted pain patient advocate Thomas Kline, MD:
See also this article in The Guardian:
The situation of opioid misuse in West Africa hasn’t received nearly as much scrutiny. But as is the case in the US, it’s critical to distinguish between the use of street drugs and medically appropriate prescriptions, and to be careful about drawing any putative link between them. There are already tight controls on the import of most opioids, including morphine, and government restrictions are generally stricter than necessary to prevent diversion. The Economist article refers to codeine, a weak opioid that isn’t as strictly regulated as more powerful opioids, and tramadol, which is a medically used opioid that, as far as I know, is not included in UN conventions and in many countries has not been subjected to the same domestic regulations as other opioids, making it easier to import and distribute for non-medical uses. So this is a public health issue with socioeconomic causes as well, and there are different potential strategies to address it, including more balanced regulations for the drugs in question. But there is no good reason to think that making morphine widely available within the medical system under controlled conditions would contribute in any significant way to this problem.
The fact that the lack of access to morphine in most of the world has been meticulously studied and highlighted in a major Lancet article as a huge public health problem in itself, and the lack of evidence that balanced domestic policies to make morphine available to those in need result in diversion to street use, should give sufficient cover to EAs and any others who want to help address this issue. Things are changing far too slowly, and if there were issues along the way that emerged in some countries they could be corrected. Even if the EA movement were to embrace this issue as a major cause area, I would see the risk of “devastating” consequences as being extremely low.
I am unaware of any major flow-through effects, other than allowing chronic pain patients to function and work, and reducing stress and suffering in family members and others supporting those in pain.
I would urge them to contact me to have a conversation about the specific ways we would use funding in support of local efforts. Contact and donation info are on the OPIS website: http://www.preventsuffering.org/