Yesterday I began reading “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness“. This was a report released in February 2015 by the Institute of Medicine which had been commissioned by the United States Government to examine the evidence base for ME/CFS. Merely getting through the report brief reduced me to hot tears and I’ve spent the past 24 hours wondering why.
One of many reasons might be that they were describing things I’ve had to figure out on my own in the midst of both medical misunderstanding and social isolation. So I began to wonder, how would I have told myself to pursue recovery given what I know today? Since my case has been unusually severe, I suspect that at least some of the advice that I’m about to give to my past self would be useful for many ME/CFS patients today. Continue reading