Chronic Fatigue Syndrome Support Group

The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

M.E. patients that are newly diagnosed, or still in the acute stages especially must be given their best possible chance for recovery and be enabled to REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management/reduction. Limiting activity levels to only as much as the patient is capable of dealing with may well be the single most important factor in the patient’s M.E. improving over time.

It is vital that patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness. There is nothing to ever be gained by people with M.E. pushing themselves beyond their limits physically as this can only cause unnecessary relapses. Permanent damage (eg. to the heart) and disease progression may also be caused and there have also been reports of sudden deaths in M.E. patients following exercise.

Avoiding overexertion doesn't guarantee a quick (partial) recovery or any recovery at all, there are other factors at work too, but overexertion is a sure way to ensure that the patient remains more severely ill and for longer than would otherwise have been the case. For those with M.E., resting as much as is needed is not just 'doing nothing' - it is an active and vital disease management process.



What is meant exactly by the term 'resting?'

Resting means completely different things at different severity levels of illness. For the mildly ill resting may mean watching TV or perhaps sitting in a chair reading a book or having a quiet night in with friends. For the severely ill, these activities are not at all restful and indeed would provoke severe relapses.

For the very severely ill, resting means lying down in a dark room, in silence and with no sensory input at all (such as TV or radio or light) and not moving at all physically or engaging in any type of cognitive activity. Clothing must also be comfortable and the room must be neither too warm nor too cold. For the very severely ill a better term would be ‘complete incapacitation,’ rather than ‘resting.’ The term ‘resting’ implies that the inactivity is optional and this is often not the case in the severely ill who are often ‘resting’ (i.e. incapacitated) because it is physically impossible for them to do anything else.

For moderately ill patients resting means something somewhere between the two extremes, and so on.

Of course for the very severely ill there will be no safe or symptom-free activity limit. Concepts of pacing or of keeping activity at a level which does not cause immediate or delayed symptoms are useless. Indeed, a sizeable proportion of the very severely ill may well be so severely affected in the first place BECAUSE of overexertion in the early stages of their illness, because they were not told how important it was to rest or were not allowed to rest adequately. This is extremely common in M.E. It is a tragedy and an absolute disgrace.
Posted on 07/03/09, 11:07 pm