book:Understanding Severe ME - Essential Guide for Family & Friends

I agree with you. If I had known about ME and pacing when I was less severe I might have been able to cut back to a level which brought PEM to a minimum for much of the time and if it is possible, go for it. From what people have said, the first advice at the clinics is to cut back drastically and it makes them feel much better.

The advice before CFS was to do on a good day 80% of what you can on a bad day, though even at the time it seemed impossible to achieve for most people. If someone has lots of help - maybe with the medical profession appreciating what ME actually IS - it could be the difference between long term ill health and a fairly decent life.

I just don't like it being called a base line. Typical of bps advice it carries an undertone of only being worse if you do things wrong. It also misses the wildly varying nature of ME. Learning to read your body is a much better way of getting the best results.

Then, of course, for many people a baseline would be less than managing to the toilet.

Heart rate monitoring is a useful thing to do and I have worn a fitbit for years now but some people seem to say that you will not get PEM if you keep the rate low enough but our anaerobic threshold changes so it doesn't work out and people get disappointed and think they have failed.

Basically the best we can do is muddle along, accepting that things will go wrong but just doing the best we can. If you really want to do something resting before hand and scheduling in lots of rest in the days afterwards can be the only thing that makes life worth living. It isn't boom and bust, not your fault, just accommadation to a chronic disabling illness.