"one of the largest sources of preventable extreme suffering in humans today" <- shocking statistic. Agree though - I read your resources about how this costs something like a million days of extreme suffering per year.
I think this is a neglected, important, tractable cause area and am very happy to see you working on this. Good luck!
I first heard of cluster headaches when I worked in a psychiatric hospital with a young man who was suicidal in part due to his cluster headaches.
I didn't realize how little access to standard treatments there is! Thank you for moving this forward.
I think this is a great initiative! I've signed both, the global and national letters (I am from the United States). As someone who is interested in preventing extreme suffering and wants to take further action, I'm curious if anyone thinks it would be worthwhile to also write a letter to my local representative about taking action? I'm currently very ignorant on how the levers and wheels of politics actually move, but I would like to learn more. I wonder if a local representative has any power to do something, and if so, which specific actions could they take? Do they have any levers to influence the government on a federal level? Could some funding be allocated to research cluster headache treatments at state universities? I'm not sure if this extra step of writing to a local representative can do anything, but I figure it's worth asking!
Thanks. :)
Thanks so much for your comment and your support! :) And yes, we definitely want to engage with representatives at all levels, both ourselves as well as in a decentralized manner (e.g., by empowering patients and other volunteers to take action locally). Any efforts are welcome. Get in touch if you'd like to coordinate somehow or if you need any advice. :)
Excellent, thank you so much! This gave me the extra push to write to my local representative about this issue. I will also speak to others and encourage more people to sign the global and national letters. As a suggestion, maybe it would be good to have a form letter option on the ClusterFree website that could be sent to one's local representative (like the one that ControlAI has regarding human extinction risk from AI).
I appreciate what you're doing, and I think this project is especially important as someone who is also very sympathetic to suffering-focused ethics (though of course, preventing extreme suffering should be common to all ethical frameworks!).
Best of luck in your endeavors! :)
Such important work - really pleased to see this initiative moving forward
Great work, thanks Alfredo and others
Wonderful initiative, signed!
Really excited about this, @Alfredo Parra 🔸 Good luck to you and the team!
Today we’re announcing a new cluster headache advocacy and research initiative: ClusterFree
Learn more about how you (and anyone) can help.
ClusterFree’s mission is to help cluster headache patients globally access safe, effective pain relief treatments as soon as possible through advocacy and research.
Cluster headache (also known as ‘suicide headache’) is considered the most painful condition known to mankind. We believe it is one of the largest sources of preventable extreme suffering in humans today. Every year, about 3 million adults (and an unknown number of minors) suffer from this debilitating condition.
And yet, even in the EU, only 47% of the cluster headache population had unrestricted access to standard treatments (primarily oxygen and triptans) in 2019. Despite affecting a similar number of people as multiple sclerosis, global investment into cluster headache is minuscule.
At the same time, countless patients have reported previously unattainable relief using certain psychedelics, even at low doses. For example, psilocybin, LSD and 5-MeO-DALT can effectively prevent attacks, and N,N-DMT can abort attacks within seconds and also have some preventative effects. However, these life-saving treatments are inaccessible to the vast majority of patients.
We want to tackle these problems by:
ClusterFree is a non-profit initiative incubated by the Qualia Research Institute.[1] It is led by Alfredo Parra, with Andrés Gómez Emilsson (President, QRI) as co-founder. Bob Wold (Director, Clusterbusters) and Jonathan Leighton (Executive Director, OPIS) are members of our Advisory Board.
We will be collaborating closely with Clusterbusters, the largest and most well-known cluster headache advocacy organization, led and run by patients. For about 25 years, they have been at the forefront of cluster headache advocacy, especially in the US and the UK. We are excited to bring more capacity and new approaches to tackle other jurisdictions, and to show that patients are not alone in this fight.
As our first project, we are publishing one global open letter and 11 country-specific open letters:[2]
Anyone can sign the global open letter. Additionally, if you live in or come from one of the countries above, you can sign that letter as well. Signatories include Prof. Peter Singer, Scott Alexander, Dr. Christopher Gottschalk (Yale), David Pearce, and Dr. Daniel Ingram.
Please share the letters widely within your network![3]
If your organization wants to show its support for ClusterFree’s mission, we can list it as a partner on our website.
A few other ways to help include:
You can get in touch any time.
We have been making good progress on a shoestring budget during the past few months. Among others, we:
Started conversations with CH advocates in multiple countries (most recently India[4], Denmark, and New Zealand).
We recently raised seed funding from a private donor to cover our core operations for the coming months. Additional funding would allow us to hire a second teammate to work alongside Alfredo at this early stage, particularly on outreach and communications. We could absorb an additional $50k–$150k immediately.
At this very early stage, we are still evaluating different paths to impact, and will likely test various strategies simultaneously to identify the most promising opportunities.
We believe ClusterFree is a great donation opportunity for people who care about relieving the most intense human suffering today. Cluster headaches represent a major health crisis even in developing countries, and we are far from having effective treatments widely available. Help us change that.
Donate
Additionally, you can consider donating to Clusterbusters or OPIS, who have been at the forefront of cluster headache advocacy and research for years.
If you’d like to help us reduce the global burden of cluster headache pain (beyond volunteering), we’d love to hear from you. Simply fill out our expression of interest form.
We are considering incorporating a charity in the UK. In the meantime, ClusterFree is fiscally sponsored by QRI.
We are very grateful to the various volunteers from the EA community who contributed to the translations.
Asking people individually to sign the letters works much better than asking in groups.
Many thanks to Jacob Woessner’s volunteering work on this front.
Website and brand design by Lombaert Studio.
I signed the open letter. I strongly support these initiatives to help people with cluster headaches.