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.