Physical activity levels in ME/chronic fatigue syndrome before and after a 2-day cardiopulmonary exercise test protocol, 2026, Receno

[Trish]

Bell Activity scale for the group was 35.5 (12.0), a little higher in males.
Hours in bed/day 9.8 (1.6)

Spoiler: Bell Scale

100	No fatigue symptoms at rest, no symptoms with exercise, normal overall activity level, able to work full-time without difficulty
90	No symptoms at rest, mild symptoms with activity, normal overall activity level, able to work full-time without difficulty
80	Mild symptoms at rest, symptoms worsened by exertion, minimal activity restriction noted for activities requiring exertion only, able to work full-time with difficulty in jobs requiring exertion
70	Mild symptoms at rest, some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty
60	Mild to moderate symptoms at rest, daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activity if hours flexible
50	Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity, overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods
40	Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity, overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties, able to perform light duty or desk work 3-4 hours a day, but requires rest periods
30	Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overeall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods
20	Moderate to severe symptoms at rest. Unable to perform strenuous activity, overall activity 30-50% of expected. Unable to leave house except rarely, confined to bed most of day, unable to concentrate for more than 1 hour a day
10	Severe symptoms at rest, bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration
0	Severe symptoms on a continuous basis, bedridden constantly, unable to care for self

https://cde.nlm.nih.gov/deView?tinyId=QJbSliKT6I

So on that scale, the mean Bell score would mean they are mild by other scales since even at 30 on the scale, they can do 50% reduced normal activity, which on other scales is necessary even to get diagnosed as mild.

 

[Sean]

show so little understanding of the reality of PEM, the impossibility of maintaining a stable baseline, and the long term consequences of trying to exercise, even carefully as they advise.

Apart from anything else, it shows considerable contempt for our hard earned experiential understanding of it, which is why they have to include a component in their definition that says we have perceptual pathology. They think that we are just ignorant delusional idiots.

It is a maddening and very dangerous double-bind for us. If we protest against it and try to point out how wrong and risky it is then that is declared to be some form of exercise or psycho-phobia, or defiant disorder, and so on. There is no end of arbitrary excuses they can use to avoid facing up to what they are really doing.

they can do 50% reduced normal activity, which on other scales is necessary even to get diagnosed as mild.

Any disease that classifies mild as a 50% reduction in activity capacity is already a very serious heath problem before even qualifying for the entry level diagnosis.

I really don't think this has sunk into the medical community yet. They still operate as if mild is just a slightly bad day.

 

[Alinda]

Sorry to derail a bit - is there some kind of standardized way of these % reductions? It has never made any sense to me what it means.