Do You Have ICC-ME And Other FAQs

Jen Unrest


By Jennifer Brea.


I just wanted to respond to a few comments and questions raised in response to recent posts in this series. If you aren’t a part of the ME community, be forewarned, much of the following will be hard to follow!

The first set of questions all circle the same core question: do you have myalgic encephalomyelitis (ME)?

I have tried my best to be clear about this but for all avoidance of doubt, the answer is: yes, yes I do. How do I know this? a) I meet nearly every criteria for ME or CFS and have since my disease became “full-blown” and chronic in May 2012; b) I have been diagnosed by several expert American MDs, including some who have participated in writing our criteria (Donna Felsenstein, Nancy Klimas, Derek Enlander, Dan Peterson, Jose Montoya, David Kaufman**), a process that has included their clinical experience along with extensive testing and cardiopulmonary exercise tests; c) I have many of the laboratory findings the research literature has established as common in ME patients (e.g., post-enteroviral sequelae, herpesvirus reactivation, low natural killer cell function, carnitine deficiency, pyruvate deydrogenase dysfunction, and acetylcholine receptor autoimmunity); and d) my symptoms have responding positively to common (US) treatments for ME/CFS, including antivirals and Mestinon. I am an acute, viral onset patient.


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