How I found the ME/CFS healing community

Science is nothing but organized common-sense.” Thomas Huxley

By mid 2020, I had been tested for every rare disease and deficiency my doctors could think of, but not for the two things I strongly believed were still affecting me: Epstein Barr Virus (the virus that causes Mononucleosis,) and Lyme Disease. I’d had both before, and my doctor, while testing me for every leukemia nameable, refused to test me for either, on the grounds that EBV (though it lives forever in the body once contracted,) never “reactivates,” and antibiotics wipe out 100% of Borrelia (the bacteria that causes Lyme Disease.) (Both claims are hotly contested within the medical community. Read more about why here.)

Even if I were right, and still being made sick by a pathogen, why was my body not able to heal? Why was I only getting sicker? By late 2020, I knew I was on my own. I temporarily suspended the hope that I would find answers in a doctor’s office, and turned instead to my own intuition. I have minimal education in cellular biology or medicine of any sort. But I used common sense combined with my keen awareness of my own body (honed, in part, by decades of high-level training) to deduce what might be happening on a cellular level.

I started my self-education with understanding mitochondrial damage and oxidative stress, the presumed physiological basis of OTS. I asked, “Why would my body not heal when the stressor (over-training) was removed?” I speculated that my nervous system must be stuck in fight or flight, chronically telling my body there was still danger, especially in response to attempted exercise. That’s how I found the theory of the cell danger response.

From there, I was in a different paradigm, one of believing my body was actually doing things that make a lot of sense, given the ongoing perception of danger. That’s when I started making real progress.

I stopped looking for a discernible thing “wrong” with me. I started seeing that many of my symptoms were a result of a correct physiologic response that had gone too far, to the point of becoming maladaptive. I speculated that this was why pathogens my immune system had formerly had under control now seemed to be wreaking havoc. I needed to figure out how to help my body rebalance.

When I began researching based on this assumption, I quickly found my community of healers. Want to start where I started? Check out Heal with Liz.