Saz94
Senior Member (Voting Rights)
Does it have to be an immunological-like reaction to exercise in order to qualify as PEM (and consequently as ME)? I don't think I've ever had immune symptoms in response to exercise...
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Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda Bateman, 2019
- Thread starter Trish
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In all seriousness, I consider this state to be non-functional. If I cannot form a complete thought nor undertake some useful physical activity then I'm incapacitated. One can't deal with life while having less planning and executing (lost the word I need here) capacity than an adult poodle.
I take the feet on the floor idea to imply ability to sit upright with feet on the floor or to stand or walk. If I were only able to slump in an armchair half alert and unable to function, I don't think I'd take it too literally whether my feet were on the floor or raised on a footstool.
For me, I would want time spent each day in 4 categories as indicators of severity of OI:
1.Lying flat, or on a shallow slope
2.Sitting upright with legs horizontal.
3.Sitting upright with feet on the floor.
4.Standing/walking
For me, I would want time spent each day in 4 categories as indicators of severity of OI:
1.Lying flat, or on a shallow slope
2.Sitting upright with legs horizontal.
3.Sitting upright with feet on the floor.
4.Standing/walking
Mithriel
Senior Member (Voting Rights)
I think if you get sore throats, swollen glands, flu like feeling or just feeling sicker, rather than just tired or exhausted, you have PEM. If you do not get that it doesn't mean you don't have it, things could be going on under the surface.
What you get in ME is a different response to exercise. People with heart disease, or MS get exhausted very quickly but they get it immediately and it is relieved by rest.
In ME you can feel fine for a few days then get an increase in all your symptoms which doesn't resolve for days, weeks or longer.
There is a whole package of things which simply come down to the statement that ME is a disease where there is an abnormal response to exercise. The invention of CFS put the emphasis on fatigue, a normal response to exercise even if it is excessive. There is a difference between post exertional fatigue and post exertional malaise that too many "experts" are not aware of so we have to keep educating them.
Some people may have such a bad response to exercise they are forced to stop before they get enough of an immune response to show.
Roll on a test
Mithriel
Senior Member (Voting Rights)
That seems like a very good way to categorize what we can do.
Dr David Bell from the Lyndonville epidemic said that his patients could do lots of things as long as they were lying down.
There is a particular feeling I get which may be the only reward with this disease. At times I lie down flat and my body says "Thank you, thank you, thank you" A foretaste of heaven, bliss.
Interesting.
maybe OT, maybe not:
I definitely have PEM, but not the first two and depending on one's definition, not the third. I do get exhausted, KO'd after any form of activity outside my capacity, which is variable. Often I'm out cold about 4 hours later, exhausted (more than baseline) one day after and still exhausted, nonfunctional two days after, not improved. Total brain fog, heavy limbs, etc. Recovery to pre-activity can take a few days, weeks, sometimes months or as I've learned at great cost, it may never fully happen.
Activity for me at least doesn't mean specifically aerobic exercise, it seems to mean (anything that requires a physiological response) x (time of exertion) x (time away from bed). Standing in one place is much worse than gently pedaling a bike for the some amount of time, although it "less effort".
For a long time I thought that's what everyone meant by PEM.
I think we often use the same words to mean different things, probably without realizing it. In the local mecfs support group, there are several people who report not having brain fog. I had believed that was a required symptom; if you don't have brain fog you have something other than M.E or CFS. I didn't know what to make of that, still don't.
Mithriel
Senior Member (Voting Rights)
I think you can safely say you have an abnormal response to exercise. Before I knew very much about ME I was still active up to a point, mildly affect probably. I found it much easier to walk for 20 minutes than to stand and wait for a bus, particularly if I had children with me.
From the Workwell CPET testing they found that our aerobic system is broken so we rely heavily on our anaerobic respiration which is really an emergency system for the body. That is the true cause of many of our problems and when it is worked out what we call PEM now will be renamed (or redefined) into something which more accurately reflects the pathology.
Post exertional fatigue has to be distinguished from what we get which makes PEM important, but it does not describe our entire problem - my day is full of microstops, rest a minute, start even when things are going well for instance. That's why it is a shame that people wonder if they fit some tight definition.
Basically, PEF is when you do too much, have a rest then feel back to normal the next day even if that is very low functioning or suffer consequences that are what you would expect like stiff for a week after digging the garden.
It is very difficult to describe but fairly easy to recognise though there will always be borderline cases.
From the Workwell CPET testing they found that our aerobic system is broken so we rely heavily on our anaerobic respiration which is really an emergency system for the body. That is the true cause of many of our problems and when it is worked out what we call PEM now will be renamed (or redefined) into something which more accurately reflects the pathology.
Post exertional fatigue has to be distinguished from what we get which makes PEM important, but it does not describe our entire problem - my day is full of microstops, rest a minute, start even when things are going well for instance. That's why it is a shame that people wonder if they fit some tight definition.
Basically, PEF is when you do too much, have a rest then feel back to normal the next day even if that is very low functioning or suffer consequences that are what you would expect like stiff for a week after digging the garden.
It is very difficult to describe but fairly easy to recognise though there will always be borderline cases.
G