In "Lions and Tigers" I observed that both activity and inactivity can harm M.E patients. While I strongly hinted that people with M.E can avoid such harm my analogy remains quite negative. Exercise and Rest are "predators" ready to "bite" any M.E patient or "prisoner" who lingers in their company too long.
Yet these two responses mustn't be rejected. One only has to look at the wider population to see that both rest and exertion are required for human health. Further; it's clear that there's no better solution to our conflicting needs for rest and for exertion other than to alternate between them. We sleep and the process heals and restores our bodies. We exert and in so doing we work to change our environment to better suit our life and the lives of our families and our society.
Any effective treatment can cause harm within the wrong context. Within M.E the timing, duration and intensity of exercise and rest determine whether the
behaviour is healing or harmful.
And this is where both medical and activist dogma severely limit those who have allowed themselves to become beholden to it: The doctor who pronounces that exercise is always beneficial; The activist who proclaims that rest can only help. These are extreme viewpoints and are valid only in extreme and limited cases. And they are relatively trivial to challenge. I wonder if the physician would like to take exercise randomly during his sleep? I wonder how activists can recommend inactivity without seeing the implicit irony?
Before an M.E patient can get to the point of seeing the benefit of enacting the opposing point of view, they must first allow themselves to see it, to consider it, to understand it. A vital step towards recovery of function for both patients and their doctors is to challenge their own bias. Intellectually it is not enough to personally attack those with opposing views, the ideas must be considered on their own merit.
I was an advocate for M.E patients from the 1990s until 2017. It was immediately clear that M.E was a contentious issue and that conflict between doctors and patients was delaying good treatment. It was therefore important for me to speak to representatives from sides of the argument. To this end I met with some of the most senior and well-known physicians and patient activists in the world. It is hardly news for me to report disagreement. What struck me however were the similarities between them.
Activists can tell M.E patients that the physicians they target are uncaring, monsters. This is wrong. The doctors I met demonstrated to me obvious care and consideration. It is inhuman to mistreat them and it is utterly foolish to reject their intelligence and expertise. Conversely some physicians tell their profession that the wall of M.E patients who express such pain are delusional or even liars. This is wrong. The activists I met were calm, rational and telling the truth. It is inhuman to leave patients to suffer and to reject their reports of harm from treatment.
The similarities between leading doctors and activists went much deeper than character and motivation. The structure of arguments, the narrative of anecdotes and the pain and sadness of "losing a patient to the other side" were themes common to both. The lines of thought, though in direct opposition, often seemed entirely interchangeable.
Exercise and rest can be predators. They can harm M.E patients. And Exercise and Rest can be saviours. They can bring healing and recovery of function.
And it is all too easy for each side to respond to this in the same way... to see only the positive sides of their own treatment and only the negative aspects of that of their opposition. This bluff feeds the ongoing war within M.E, but upon closer examination it breaks down: Doctors who recommend exercise fall back to rest as soon as their M.E patients start to deteriorate. Likewise, I have known patient activists who spend their working lives promoting rest to quietly increase their levels of exertion when such becomes possible.
Exercise and Rest are not tigers and lions, they are two of the greatest medicines that will ever be. They are as close to panaceas as we will ever get, yet, as with all effective medicines, they can and will cause terrible harm when administered in the wrong context.
"The prisoner looked around in wild despair."
I remember it clearly. I had looked all over M.E and I had concluded that everyone was wrong, that the answer, or even a closer approximation to an answer simply did not exist. Then it hit me. What if everyone was right? What if, instead of rejecting all the ideas on the table, I treated them as what they were: Genuine contributions from intelligent, caring, individuals... Each correctly describing an aspect of M.E.
Listen, I am very close to writing the word "synergy" right now so I'll stop here before the Gods of pretension take offence. Suffice to say: The emphasis of this text going forward will be on extracting the benefits of rest and exercise while leaving the disbenefits and the war between doctors and patients far behind.
See you.
The opposite of harm
