Unfortunately, the very first words out of an M.E patient's mouth tends to set doctor and patient against each other. The problem, the thing that above all drives M.E patients to their physician is simple enough to state: Exercise makes them ill.
To start there is a common prejudice against people who are allergic to hard work. M.E is a cruel, often painful and isolating experience and one that is made so much worse by the fact that the disease itself makes sufferers appear lazy.
A good physician has no time for social stigma and will listen to every patient, but still, the very idea of "Post Exertional Malaise", illness following exercise, goes strongly against the grain. It is a nonsense. It stands against years of training and experience. Exercise makes you fit. Exercise increases health, quality of life and longevity across the board. How can exercise possibly be harming the patient in front of them? It is ridiculous.
And so it has been hard, very hard, for M.E patients to express their problem. M.E patients report illness after exercise but they find themselves treated for general "fatigue". They tell their doctor that they have "Post Exertional Malaise" and then find their doctor is treating them for the exact opposite, de-conditioning (Pre-Exertional Malaise). In my experience it took literally 30 years (1985-2015) for M.E patients to be able to even express their primary symptom to medicine and have it widely accepted. And throughout this period M.E patients have been called liars, or lazy, or delusional.
The problem is that if exercise is harmful and rest necessary the physician is placed into the very same bind that M.E patients live each and every day: How can M.E patients rest for an indefinite period? You could take an entirely healthy person and destroy their health with nothing but enforced torpor. No doctor can, in good conscience, prescribe long-term bed rest in darkness and social isolation to their patients. It would be gross malpractice. It would destroy their physical and mental well-being.
Yet here it is. The primary symptom of M.E is illness following exercise. That is why the person is sitting there in the surgery: Something has broken. They are not fatigued after exercise - they are made ill by it.
Yet, it is also true that physicians have a point. Inactivity, especially long-term, can only add symptoms to an already over-burdened patient. A patient reporting M.E will have been ill for many months, they will be deconditioned and deconditioning will be creating more and more symptoms within them.
In truth M.E is a deadly dance between activity bringing on illness and resulting inactivity doing the very same. It is loop, often a downward spiral and made much worse by doctors and patients squabbling over the relative merits and demerits of exercise.
The primary symptoms of M.E are both post exertional malaise and pre-exertional malaise. Doctors and patients who can embrace this contradiction, and put aside the apparent conflict between them, are in the best position to be able restore health and function.
