Andrew,
Great topic. My choice:
Exertion Intolerance EI (or Physical Exertion Intolerance-- PEI)
exacerbated by normal and above levels of physical and/or cognitive activity; significantly worsened following prolonged and/or strenuous activity; acquired (did not exist pre-illness); may be related to decreased metabolic energy production and imbalance between oxygen supply and demand; evidenced by overwhelming lack of energy, inability to maintain usual routines, decreased performance, impaired ability to concentrate, pain, and possible abnormal heart rate and dyspnea with activity.
Adapted from Activity Intolerance, Tabors Cyclopedic Medical Dictionary, 16th Ed. used in the diagnosis of diseases such as viral hepatitis, myocarditis, rheumatic fever, TB, anemia, and others. Each disease customizes the description to match its symptoms.
Formal definition of Activity Intolerance is a state in which an individual has insufficient physiological or psychological energy to endure or complete required or desired daily activities.
I changed it to Exertion Intolerance to keep the focus on the physical and customized it to ME/CFS symptoms.
Gemini
Good find, but I am not sure about that one because it might be used against us (isn't everything). Many of us don't have any symptoms until we do something that takes us over our personal limit so a doctor could ask if patients can go swimming, say and decide there is no PEM because they can. I think what I mean is that our limits are so variable a doctor might think we haven't got it because in other diseases which get worse with exercise it is always the same.
I'm trying to say something in my head so bear with me :Retro smile:
Take heart disease, the heart can only send so much blood round the body so there is a lack and you can't exercise. But it is actually at the point of producing energy we have the problem. It is like HIV, other diseases can cause problems with the immune system, but it is the immune system that is wrong in AIDS. And since it is these energy producing systems that bring about recovery we have an abnormally long recovery time. In fact we often go on getting worse for days.
So we have a problem with exertion that is totally out of proportion. If we talk about our symptom as being the same as you get with heart disease the doctor will look at us and think his patients with heart disease can do much more and he can see the damage to their bodies so we must be exaggerating. They also recover much quicker so we must be revelling in it.
None of this would matter if doctors had a proper concept of ME. Ramsay spoke of it as a disease where exercise made it worse and if his ideas had been taught to doctors and the psyches hadn't hijacked it, it wouldn't matter what the symptom was called as everyone would interpret it correctly.
Mithriel