All of jonleighton's Comments + Replies

There is this write-up from 2020: https://www.medicusmundi.ch/de/advocacy/publikationen/mms-bulletin/palliativversorgung/advocacy-fuer-palliativmedizin-und-pflege-ein-weltweiter-querschnitt/how-a-local-champion-can-bring-the-government-on-board

More recent updates in our December 2022 newsletter: https://mailchi.mp/106e8af12947/opis-december-13469449

Yes, I  agree. Asking people who don't suffer from a condition to evaluate it is already an imprecise approach, and it just doesn't work for extreme suffering. I think self-evaluation is essential. A study on people with cluster headaches who had also experienced other sources of pain, including childbirth, kidney stones and gunshot wounds, provides a means of normalising the scale by re-setting the meaning of 10 (we reproduced the graph in our policy paper on cluster headaches). The measure was pain intensity, but the same approach could be used for ... (read more)

Thanks for writing this report, which is really well researched!

One point I would stress, which you also hinted at, is the inadequacy of current metrics, including the WELLBY (though a definite improvement on the DALY and QALY), to properly account for the reality of extreme suffering. While 0-10 scales are common and useful, they impose the compression of a complex phenomenon onto a superficially linear scale that then gets treated as such, as if the different points on the scale represent equivalent increases in a cardinal unit. Pain and suffering that a... (read more)

Thanks, Jamie. Yes, I entirely agree, assuming of course that this epistemology encompasses subjective experience. In other places I consistently refer to the combination of compassion and rationality as core values. In fact, one could argue that compassion is a consequence of rationality if one takes into account the content of all current and potential subjective experiences/mind states as  the most relevant part of reality to act upon, and one also takes a metaphysically accurate view of personal identity. In this post I didn't focus on rationality because it is already a strong given within the EA community (although I dispute the rationality of some widely held principles), whereas concern for suffering is more variable.

The definition I use is caring about suffering – others' and also one's own – and being motivated to prevent or alleviate it.

For what it's worth, I'm on the list and closely connected to EA :)

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.

Improving access to effective medication to treat cluster ("suicide") headaches

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 s... (read more)

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:

http://face-facts.org/wp-content/uploads/2018/04/... (read more)

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/

Yes, sure. For patients in the end stages of terminal diseases such as cancer or inadequately treated AIDS who are in severe pain, dependence is clearly not an issue. For others, short-term treatment with opioids has been shown in studies to lead to dependence in only a small fraction of cases. And for those with chronic pain, dependence on medication is arguably much less of a concern than for them to suffer.

The opioid crisis in the US and the irrational response by the authorities to drastically limit opioid prescriptions have been devastating to chronic... (read more)

As you know, Lee, your post increased our interest (OPIS; http://www.preventsuffering.org) in this issue as a potentially tractable cause area, and after the Lancet Commission report a year ago, we became engaged with the issue through our UN Human Rights Council event and advocacy (http://www.preventsuffering.org/pain/). We have since been contacted by palliative care associations about collaborating, and so I prepared a document with some new thoughts and an analysis of promoting morphine access as a potentially cost-effective EA cause area for those int... (read more)