Print Version August 2nd, 2014
I spoke too soon. Not long after saying that I was doing more or less OK the morning after my return to preaching I began to feel the backlash. They are still here today — the morning after the morning after. Tiredness, fuzzy-headedness, lack of concentration, nausea, aches, generally feeling yucky — like low-grade flu symptoms. This is a relatively mild dose of post–exertional malaise (PEM), possibly the defining symptom of ME or chronic fatigue syndrome.
I always think I’ve gotten away with it when the immediate aftermath of some activity that pushes the envelope slightly isn’t a symptom flare. And then I am disappointed when PEM arrives later.
This seems to me to be the flaw in Graded Exercise Therapy as I was introduced to it (first in the FINE Trial and then in the year-long Liverpool University Hospital treatment programme). Their protocol relied on very slowly increasing exercise activity with the idea that each session would provoke symptoms slightly but that recovery would occur just as rapidly. Each day you are supposed to increase the duration of the exercise by 5%. I found that I could always start gently (10 turns of a stationery bicycle with no resistance) and build up to a certain point over a period of weeks with relatively little push-back but at some point I would always be hit with PEM, often severely, which would make me feel awful. At first the advice was to push through the malaise but that made it worse and worse. Later the advice was to wait for some recovery and then go again even more gently but all that did was postpone the point where the crash happened. At the end of both programmes I was significantly worse off than when I started.
It is interesting to note how Dr Nancy Klimas has implemented a variety of exercise therapy for her patients. It recognises the reality of post-exertional malaise and involves a heart-rate monitor and staying within one’s aerobic threshold to explicitly not provoke symptoms. I have found it much more practical (other factors like stubbed toes aside!). But the ‘exertion’ in PEM is not only physical exercise: standing up to preach does it to me; listening in spiritual direction much over an hour a day; pushing through the brain-fog to write stuff; coping with anything mildly stressful can sometimes do it too. That last one is variable: there was extreme stress living through my mother’s sudden onset of dementia a few months ago without severe PEM; but sometimes an awkward phone call can be enough.
Entry Filed under: Thoughts