Just about the only objective indicator of the severity of a case of M.E is activity level.
Activity monitors can measure miles walked as tens of thousands of steps right down to tens of "steps" as an M.E patient shifts their leaden body-weight in bed.
But there are two important limitations of using step-counting to produce a snapshot of M.E.
Firstly, M.E is experienced as illness following exertion, but not necessarily physical exertion. Intellectual activity also brings on malaise as do heightened states of alertness due to stress or intense emotion.
I measure physical effort in steps and I attempt to measure my intellectual exertion by measuring my output in words. Yes, some words come easier than others, but then the same is true for steps also. It's only a rough guide. My physiological responses to stress or emotion are, however, harder to quantify.
Existing, as we do, within groups of muscles set in opposition to each other it is quite possible to be highly actively *inert*. Holding one's body in extreme non-productive tension seems like a foolish thing to do with M.E, so I get around the measuring limitation by avoiding these forms of activities wherever I can - or at the very least expressing my tension, through exertion, or verbally.
The second limitation of activity monitoring is when an entire day's activity and sleep are reduced down to a single step-count. This loses vital information about when activity and inactivity are occurring and this tends to unhelpfully group patients at very different stages of M.E together.
For example, we may have two patients, each reporting 1,000 steps in a day, the first gaining these through a smooth, sustainable activity-curve, while the second is stumbling through their day in violent fits and starts. I know which of these two I'd put money on to benefit from exertion increase and which will surely worsen as a result.
Sleep measurement is also vital within the management of M.E. Electronic devices in the home are catching up in this regard, though it is often hard to interpret the information presented. What is clear is that a few more minutes of REM sleep can make all the difference in the world to one's mental outlook and concentration and that a single, sustained, sleep *during the night* gives the best chance of activity the following day. However, as with activity, changes to sleep cannot, I think, be usefully imposed from above. Within M.E, improvement and recovery of function is nurtured and grown.
M.E patients can chart their steps and sleep automatically. All M.E patients should be doing this. It is not enough to say to the doctor "exercise hurt me", both doctor and patient must be able to see the effect of any and every event or intervention on a patient's ongoing level of activity over time. If exertion truly leaves a scar, then let it be recorded. Let it be seen by all.
