You may be interested in myalgic encephalomyelitis, which had an estimated disease burden in the US of 0.7m DALYs [1], and NIH funding of $13m this year. That would put the ratio at 0.06, far below the other diseases you've listed. The disease burden estimate is pre-pandemic, and ME/CFS is one of the more common sequeala of covid, so the ratio is likely worse again.
ME/CFS is also incredibly interesting for its hallmark symptom - a highly unlinear response to exertion. Mild patients can often go about parts of their day to day life just fine, but if they hit an exertion threshold they can be bedbound for weeks. Severe patients are permanently bedbound and processing light is beyond the exertion threshold for some.
Mitochondrial dysfunction [2] is thought to be central to the disease. A large scale (n=18k) GWAS study will be reporting in the next two months [3]. Strong evidence of autoimmunity have been found in a subset of patients (hot off the press, from a recent conference [4]).
Thank you for writing this! I’m quite shocked that through my whole PhD, in the Developmental, Regenerative & Stem Cell biology department no less, I never learned about endometriosis. I agree that it is extremely interesting. I’m going to be thinking about this for a while. Given its similarity to cancer, do you know if anyone is trying immunotherapy approaches to treatment?
Fascinating article, thank you. I'm one of the many women who know of endometriosis, but couldn't say what it was except "tissues growing where they shouldn't" - despite having a colleague suffering from severe endometriosis and booked for surgery.
Had never heard about the similarities to cancer before. Do we ever see malignant cancers (as in life-threatening) emerge from ectopic endometrial tissue? (Apologies if this is mentioned and I missed it!)
So, why don't cancer treatments work here? Or would they likely work, and just haven't been tested yet?
(And regarding surgery, codetweep on Hacker News claims (https://news.ycombinator.com/item?id=44274327) that the reason the surgery doesn't cure it is because most surgeons aren't removing enough... is this accurate?)
You probably need to address the gnrh antagonists, particularly those formulated with hormonal addback like myfembree, which show best available results for management of endometriosis pain
You may be interested in myalgic encephalomyelitis, which had an estimated disease burden in the US of 0.7m DALYs [1], and NIH funding of $13m this year. That would put the ratio at 0.06, far below the other diseases you've listed. The disease burden estimate is pre-pandemic, and ME/CFS is one of the more common sequeala of covid, so the ratio is likely worse again.
ME/CFS is also incredibly interesting for its hallmark symptom - a highly unlinear response to exertion. Mild patients can often go about parts of their day to day life just fine, but if they hit an exertion threshold they can be bedbound for weeks. Severe patients are permanently bedbound and processing light is beyond the exertion threshold for some.
Mitochondrial dysfunction [2] is thought to be central to the disease. A large scale (n=18k) GWAS study will be reporting in the next two months [3]. Strong evidence of autoimmunity have been found in a subset of patients (hot off the press, from a recent conference [4]).
[1] https://oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php
[2] https://journals.physiology.org/doi/full/10.1152/physiol.00056.2024
[3] https://www.decodeme.org.uk/
[4] https://events.mecfs-research.org/en/events/conference_2025/videos/jeroen-den-dunnen-autoimmunity-cause-mecfs
Thank you for writing this! I’m quite shocked that through my whole PhD, in the Developmental, Regenerative & Stem Cell biology department no less, I never learned about endometriosis. I agree that it is extremely interesting. I’m going to be thinking about this for a while. Given its similarity to cancer, do you know if anyone is trying immunotherapy approaches to treatment?
Seems like there are strong theoretical reasons why it would work, but not seeing any active trials for it unfortunately: https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
Fascinating article, thank you. I'm one of the many women who know of endometriosis, but couldn't say what it was except "tissues growing where they shouldn't" - despite having a colleague suffering from severe endometriosis and booked for surgery.
Had never heard about the similarities to cancer before. Do we ever see malignant cancers (as in life-threatening) emerge from ectopic endometrial tissue? (Apologies if this is mentioned and I missed it!)
Thank you very much for this and your work behind it! I have at least 3 women in my direct circle of friends dealing with the desease. They sometimes joke that at least it might be over in the menopause (https://www.medicalnewstoday.com/articles/endometriosis-and-menopause).
Great post.
There are also rare cases of ‘cerebral endometriosis’ which can present with psychiatric symptoms https://pmc.ncbi.nlm.nih.gov/articles/PMC9738496/
So, why don't cancer treatments work here? Or would they likely work, and just haven't been tested yet?
(And regarding surgery, codetweep on Hacker News claims (https://news.ycombinator.com/item?id=44274327) that the reason the surgery doesn't cure it is because most surgeons aren't removing enough... is this accurate?)
You probably need to address the gnrh antagonists, particularly those formulated with hormonal addback like myfembree, which show best available results for management of endometriosis pain