Me (Jen) just before a VO2 max test, a form of self-inflicted torture in which I ride on a stationary bike for three minutes so that I can demonstrate, objectively, that I'm really not meant to do things like ride bikes.
The data from the test were somewhat useful. Most useful was the overpowering sensation I felt in my brain minutes after concluding the test. I had often described to doctors the feeling that my brain was "dirty." (One of a hundred missed clues!) It was the only word I had for it. What I meant by it was soot and ash dirty--scummed with something that should not be there.
This was the first time I was able to tie that sensation to exertion, posit that it was caused by a buildup of lactic acid in my brain, and then immediately drink copious amounts of electrolytes. Ordinarily, exertion like that would have sent me reeling for weeks. I did relapse, but it was much shorter and much less severe than it would otherwise have been.
After this, I started drinking (sugar free) electrolytes prophylactically, one of the many micro-interventions that has led to a better quality of life.
We all have anecdotes like this, when have an experience and uncover a relationship that leads to an intervention or a strategy no doctor, even some of those most experienced in treating our condition, were likely to advise.
How long before some of these anecdotes we pass around among each other are turned into avenues for research, so that we don't have to go for years before stumbling onto something that could change our lives?
How long before doctors stop advising us to exercise?
Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing one still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")
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