I've just got a copy of all my medical records, and some notes from psychiatric evaluations early in my illness said that I did not have CFS, because my fatigue was improved by rest. I've always been a bit confused by some criteria which insist that fatigue not be improved by rest - is this normal for people here? I've always ended up feeling a lot better after resting up fully, and then get rapidly and easily exhausted by any new activity.
Oh for goodness sake! I get soooo exasperated with the medical profession!!!
I had something similar (but opposite) when I was assessed/diagnosed by my region's NHS 'expert' in the UK.
He asked me if I felt ill, or fatigued, after exercise.
I replied that I feel ill all the time.
And then he paused, and asked me the same question again.
So I said the same again.
Then he paused longer, and I thought to myself: "if I don't agree with him here, then I'm not going to get a diagnosis."
So, I said: "That's right, after exercise!"
I mean, what do they train these people in? Because it's clearly not ME.
I feel ill all the time, and my symptoms are exacerbated by exertion.
Why is that so hard to understand for the medical profession?!?!?
Their ignorance is dangerous, and I think what they have done for you Esther is a case of medical neglect.
And in your case Esther, their logic is completely flawed.
Of course rest can help us or we'd all be at the very worst stage of our illness! (I think)
The difference between us and people without ME is that rest doesn't lead us to a 'normal' recovery from exhaustion and fatigue etc. But rest
can lead to a reduction in symptoms over time in many of us. At the very least, resting allows us to avoid a post exertional reaction, and so allows the body to stabilise. (Although I understand that this is not predictable if a person's illness is very unstable, or if they are at their very worse in health.)
If rest didn't help us, then I think that we would not
ever get any better with rest, and we would all be at the lowest point that we'd ever experienced during our illness.
It would be a one-way downwards spiral into permanent exhaustion and death.
ETA: I've just read through some other posts, and maybe some of what I've said is a bit simplistic. It can depend on the exact nature of an individual's illness in a particular point in time; the severity of a person's symptoms; and the stage that someone is at in their illness. But in my personal experience, rest leads to an improvement (or stabilisation) over time, but not a cure. I would guess that most people would see some sort of benefit from resting, although of course some people's illness maybe either extremelly unpredictably unstable, or very steady or on a general negative trend.