When we strip away the appalling politics of ME, the threats and the cruelty and most especially the extremism then we return to assuming that, at a basic level, both patients and doctors are acting in good faith.
Patients really are reporting harm following exercise and doctors really are attempting to help them to deal with it.
Patients are correct: rest can make the very worst M.E symptoms diminish. And that is a huge relief. M.E can be experienced, not simply as crushing fatigue but also as pain. This may include ultra-sensitivity to light, sound and touch and it may include intense, unremitting, muscular and/or joint pain. It is a true blessing that there is some way to halt symptom progression in M.E.
However, as we tip over to the patients' way of thinking, so the dangers of rest present themselves and our physicians are absolutely correct to warn us of them. Both the human mind and body require activity in order to maintain health. Inactivity leads to illness. Long-term inactivity leads to serious illness. The malaise in M.E isn't simply post exertional, it does not always follow activity, it follows inactivity as well.
Our doctors stress the dangers of inactivity and promote exercise for the mental and physical health gains associated with it. According to them, progress towards full-function must always be made. Gains must be held onto and symptoms, as far as is possible or tolerable, ignored.
But as doctors promote activity, so the M.E patients' point of view becomes more and more relevant. Patients warn each other about the dangers of over-exertion because, through experience repeated over decades, they have learned that in M.E activity often comes at a heavy cost.
It is all very well for a doctor to prescribe exercise: They are not going to have to lead the miserable, long-term, daily life of desperately low-function should such treatment bring harm.
On the face of it; this seems to be an argument for finding a simple balance between activity and inactivity. The analogy is a tightrope walk: If you tip over into sustained activity. It is unrecoverable. You will fall. If you tip over into sustained rest, this too is an unrecoverable error and you will fall. Generally; This is how things are. Balancing exercise and rest is a common theme within people's recovery stories and, I am pleased to report, was mentioned by a General Practitioner I met for another matter only last year. Efforts to raise awareness of M.E have clearly been successful.
It is no surprise, I think, that those M.E patients and M.E patient activists who maintain an extreme view against exercise also tend to be the ones whose health is in decline and whose outlook the most aggressive and negative. The direction of cause and effect here remains unclear but I have found the association to be strong.
Likewise, it should be no surprise that the physicians who take an extreme view-point the other way, that exercise is always good and that rest always bad, are dogged with reports of harm and negative experiences from patients. Again the direction of cause and effect is muddied but the association strong.
Conversely, doctors and patients who take a balanced view of the benefits and the risks of both exercise and rest find that they can talk to other doctors and M.E patients who've reached the same state of equilibrium.
Perhaps the most important thing we can take from the idea of a tightrope is that mentally we must remain impartial. We must not allow ourselves to fall into bias and dogmatic belief.
M.E patients should always bear in mind that a diagnosis of M.E does not magically release them from their body's fundamental requirement for exercise in order to maintain physical and mental health.
Likewise, physicians should always remember that many symptoms particular to M.E follow exertion and are so aversive, so utterly intolerable, that they can send patients to bed for decades.
A balanced view of M.E includes all others. Yes, M.E is a bind, a contradiction, a snare, a maze of twisty passages all the same: were it not so, patients and their physicians would have found their way out long ago.
The text to follow aims to go deeper into M.E. I hope to suggest an explanation for the years of conflicting advice given to M.E patients, one that validates the effort and contributions of both sides. Further, I hope to put forward an approach to
M.E that respects the balance between activity and inactivity while yet
making progress towards recovery.
TLDR Summary: We accept both Doctors and patients views of M.E as correct and recognise the dangers of extremism and the importance of a balanced response to M.E.
