⬇️ This could potentially be an opportunity to greatly speed up research into ME/CFS.
@wecrunchme provides data and charts showing why this is of utmost importance — for decades the world has ignored unimaginable amounts of suffering of tens of millions of people w/ ME/CFS.
ALT Chart showing NIH research funding relative to years lived with disability for various diseases. ME/CFS is the lowest at 1%, followed by migraines at 3% and Long Covid at 14%. HIV/AIDS and Down syndrome are highest at >2000%.
Over the next decade, AI is likely to create an extraordinary amount of new philanthropic capital, much of it concentrated in the US and flowing through EA-adjacent circles. Those networks have the potential to (re)create entire scientific fields.
The question for our community is whether ME/CFS and related (post-)infectious illnesses will even enter the conversation. There are good reasons to think they will not do so automatically.
For decades, institutional medicine has underestimated the scale and significance of post-infectious chronic illness. Philanthropists will inevitably inherit many of those priors.
That is one reason I find initiatives like Intercept so encouraging. They recognize that the downstream consequences of common infections deserve far more attention than they have received.
But one critical omission remains. While preventing future infections is essential, prevention comes too late for the millions already living with the long-term consequences of past infections. They need to be part of the same broader framework.
Also, the discussion tends to focus on dramatic endpoints such as stroke, dementia, and cardiovascular disease. Those outcomes matter enormously. But there is another burden that is much harder to see and measure: people who simply never feel the same again after an infection. They recover, but not completely. They have less energy, lower exercise capacity, poorer resilience, and a persistent decline in everyday functioning that often escapes diagnosis.
Some meet criteria for ME/CFS. Many probably do not. Together they may represent one of the largest consequences of infectious disease, yet they barely register in this conversation. They remain mostly hidden.
Nobody knows exactly how these conditions relate biologically, and ME/CFS is almost certainly heterogeneous. But there are good reasons to investigate potential overlaps with mechanisms of aging and the possibility that there is a continuum between "not feeling the same" and ME/CFS.
If the next generation of philanthropists is going to reshape medicine, we need to help them see the whole picture through careful reasoning, honest uncertainty, and the best evidence we have. Once you do see it, it becomes difficult to understand why (post-)infectious illness remains so neglected.