this post was submitted on 27 Jun 2023
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My husband has ME/CFS, like the Physics Girl. It's an absolutely devastating illness. He was a very active 35 when he was told there's no cure, not even a treatment, and that pain/fatigue was his life now for the rest of his days.
We've been around this long enough to see promising drug/cure/treatment/diagnostic tests come and disappear, month after month, year after year. The influx of funding/awareness linked to Long Covid is incredibly welcome, but many instances are repeats of previous ME/CFS research, so it holds up previous findings but doesnt drive anything forward. There's not been any real progress in the last 2 years, and the funding/focus is waning. I may be jaded, but hopes are low. I also sincerely hope I'm wrong.
There's no treatment that's close to a cure, but my symptoms are improved by a combination of high dose Coenzyme Q10 and creatine, along with Mestinon for orthostatic intolerance. I'm working with a team at Brigham & Women's in Boston, led by Dr. David Systrom, that is exploring the idea of mitochondrial dysfunction as the underlying pathophysiology. Last year I participated in a phase I clinical trial of a new drug targeting a mitochondrial receptor, but we're still waiting for those trial results to be released.
This particular team is doing invasive cardiopulmonary exercise testing (iCPET) as diagnostics, if you've not had that explored yet. It didn't give me much in the way of treatment options beyond what I mentioned above, but at least it's given me some semblance of hard data to provide legitimacy when explaining my condition to people.
I only mention because I'm not particularly active in the ME/CFS circles because of the high volume of disappointing red herrings, so I'm not sure how well known this path of inquiry is.
I'm so sorry.
Despite no close-to-home stake, I'd also really like it if you were wrong.