Jen Brea no longer "has" ME CFS

"Unrest" documentary filmmaker and activist, Jen Brea writes, "By any definition, I no longer meet the criteria for myalgic encephalomyelitis. My physical and cognitive post-exertional malaise (PEM) are both gone. I have not crashed since I left the hospital. My POTS is gone. My peripheral neurological symptoms, sound sensitivity, sensory processing challenges, difficulty regulating my body temperature, intracranial pressure, brain inflammation and muscle fatigability are all gone. I am off Valcyte, Famvir, Mestinon, and all other ME or POTS drugs...

I was an acute, post-viral onset patient. I have never had any symptoms that I would have interpreted as structural, rather than systemic. I never had any discernible problems with my neck. As it turned out, the mechanism was structural. Its impacts were systemic...

And now, Jeff Wood and I are the first two patients (as far as we know) to meet the International Consensus Criteria for ME and to have our ME resolve due to this fusion surgery...

I found improvement of essentially all symptoms with rest/pacing (not included in the table). Specific symptoms further improved with mold avoidance, Valcyte, Mestinon and Fludrocortisone. Even with these treatments, I still met the criteria for ME but shifted from the “severe” end of the spectrum to “moderate.” I found resolution of essentially all of these symptoms after my craniocervical fusion and tethered cord release surgeries, and no longer meet any criteria for ME or CFS...

Whatever the cause or central mechanism of your ME, there is a reasonable chance that when it is discovered, a treatment may already exist, waiting to be applied to a population it never imagined could need it..."

Read her incredible story here:


I am glad that Jen was able to make a full recovery from this awful disease, be it ME or CCI. Her condition might lead to other cures for ME/CFS, hopefully.

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