Thanks for this writeup. I found it thoughtful and compelling.
My understanding is that ME is real, serious, and understudied/underfunded. Perhaps the core reason it’s understudied is that it’s unclear where to start, physiologically speaking—there’s a lot of ontological uncertainty in terms of what this thing is that sometimes cripples people.
This is sometimes solvable by throwing resources at the problem, and sometimes not.
It might be helpful to survey some other diseases that followed a similar trajectory (mysterious crippling conditions that later resolved into known diseases with known causes and known treatments) and see if there are any general lessons to learn. My expectation here is that often, what makes a mystery disease ‘make sense’ is a new method that gives a novel/fresh window into physiology. Celiac disease could be an interesting case study: it was hugely mysterious (and hugely underdiagnosed) until (1) we got a decent IgG screen, and (2) we started to understand how gut permeability works.
I’d also suggest that you may be a little too cynical about alternative medicine; there’s a huge amount of snake-oil there, but alternative medicine is also highly heterogeneous, exploring a lot of the possibility space. There will be a lot of bs, but there often are some pearls as well. Mainstream medicine is also not particularly known for immediately finding these pearls and synthesizing them back into the medical literature, so I think it’s also plausible that a viable way to make progress on this problem is to survey what alt-med thinks it knows about ME, filter the bs out, and see if there’s anything left that can help mainstream medicine understand what ME is and what general class of treatments might help.
I think the fact that there are some pearls in alternative medicine but there no efficient way to find them is a more fundamental problem that is it’s own cause worth looking at.
Our at LessWrong I wrote proposed Prediction-based Medicine. It would be possible to create a startup that puts Prediction-based Medicine to work and afterwards it would be possible for patients to go to alternative medicine providers who can reliably predict the treatment success they have for the patients.
The startup would need a good team and some funding but Musk-level funding wouldn’t be required to put the idea effectively to work.
Thanks for this writeup. I found it thoughtful and compelling.
My understanding is that ME is real, serious, and understudied/underfunded. Perhaps the core reason it’s understudied is that it’s unclear where to start, physiologically speaking—there’s a lot of ontological uncertainty in terms of what this thing is that sometimes cripples people.
This is sometimes solvable by throwing resources at the problem, and sometimes not.
It might be helpful to survey some other diseases that followed a similar trajectory (mysterious crippling conditions that later resolved into known diseases with known causes and known treatments) and see if there are any general lessons to learn. My expectation here is that often, what makes a mystery disease ‘make sense’ is a new method that gives a novel/fresh window into physiology. Celiac disease could be an interesting case study: it was hugely mysterious (and hugely underdiagnosed) until (1) we got a decent IgG screen, and (2) we started to understand how gut permeability works.
I’d also suggest that you may be a little too cynical about alternative medicine; there’s a huge amount of snake-oil there, but alternative medicine is also highly heterogeneous, exploring a lot of the possibility space. There will be a lot of bs, but there often are some pearls as well. Mainstream medicine is also not particularly known for immediately finding these pearls and synthesizing them back into the medical literature, so I think it’s also plausible that a viable way to make progress on this problem is to survey what alt-med thinks it knows about ME, filter the bs out, and see if there’s anything left that can help mainstream medicine understand what ME is and what general class of treatments might help.
After different forms of resting https://curetogether.com/chronic-fatigue-syndrome/ig/treatment-effectiveness-vs-popularity Low-Dose Naltrexone seems to be the treatment that was reported as most beneficial on CureTogether for CFS. Fortunately there’s an ongoing clinical trial to test this treatment.
I think the fact that there are some pearls in alternative medicine but there no efficient way to find them is a more fundamental problem that is it’s own cause worth looking at. Our at LessWrong I wrote proposed Prediction-based Medicine. It would be possible to create a startup that puts Prediction-based Medicine to work and afterwards it would be possible for patients to go to alternative medicine providers who can reliably predict the treatment success they have for the patients.
The startup would need a good team and some funding but Musk-level funding wouldn’t be required to put the idea effectively to work.
The first link seems to be dead by now, the second one moved. Here are the most recent (archived) versions that I could find:
https://web.archive.org/web/20171230194806/http://curetogether.com/Chronic-Fatigue-Syndrome/ig/treatment-effectiveness-vs-popularity
https://sites.uab.edu/younger/2017/02/23/ldn-chronic-fatigue-syndrome-clinical-trial/
If I understand it correctly, then the study you mention is scheduled to end in August 2022, this year: https://clinicaltrials.gov/ct2/show/NCT02965768 (backup)
It contains only 30 participants, but still better than nothing.
All great points, thanks!