Phoenix Rising - Cort Johnson's Column
...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.
Pacing as a Dynamical Embedded, Embodied Treatment/Prevention Strategy in ME/CFS. Bruce Carruthers
(IACFS/ME Conference 2009)
by Cort Johnson
The UK’s NICE guidelines on ME/CFS did not endorse pacing (i.e. energy envelope techniques) even though most patients report that it works. One reason was their difficulty in defining it and the lack of research studies. (One wonders if it also conflicts with their fundamental view of this disease?) Pacing involves staying within ones energy envelope in order to avoid symptom flare-ups, to feel better, and (hopefully) to build up vitality over time.
Dr. Carruthers, one of the creators of the Canadian Consensus Definition, has, on the other hand, found PACING to be ‘an essential therapeutic strategy’ for his patients. He was obviously not happy seeing this valuable approach to ME/CFS ignored simply because the authors couldn’t define it precisely. He believes the NICE authors simply don’t get it about pacing and thus are ignoring a fundamentally important aspect of this disease.
Dr. Carruthers believes pacing is an essential strategy because the ‘delayed and prolonged’ fatigue in ME/CFS is fundamentally different from the kind of fatigue found in other diseases. Putting them rather low on the ladder of his estimation, he noted that “even the authors of the NICE Guidelines ‘ are (finally) beginning to realize this but unfortunately they still don’t fully understand what this means."
If I understand him correctly, ‘fatigue’ is part of a complex control system. When we’re too active and our bodies are beginning to suffer, fatigue sets in and causes us to reduce our activity levels. Of course we can override this fatigue command for a time with stimulants or by ignoring it, etc. but once the command is obeyed and we become inactive, the fatigue disappears rather quickly. It’s a very easily learned behavior pattern; do too much, suffer from fatigue; obey the fatigue signal, rest and quickly recover.
That pattern, of course, has just been shredded in ME/CFS. For one, the onset of fatigue is delayed - and what a problem that causes. You can engage in an activity and feel fine and then collapse hours or even days later. Not only that, but because the fatigue state is so prolonged, it’s difficult to tell cause and effect. Was it that activity three days ago or was it something yesterday that made my symptoms so bad today? Or was it because I overdid it three days ago that this minor activity I did yesterday triggered more fatigue today? (Throw in the fact that ‘fatigue’ itself impairs our ability to understand complicated situations and you can see how difficult it is for patients to know – particularly when they’re symptomatic – what has caused what. )
Many patients do eventually learn how operate within this vastly new fatigue paradigm. Dr. Carruthers notes that ME/CFS patients were PACING long before NICE came on the scene. When PACING works, it works because patients figure out their own fatigue patterns and that’s something that no Top-Down strategy such as NICE can provide.
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