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.

 

[rvallee]

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.

Not really, it's not something that can be quantified, there is no "unit of exertion/functioning" or anything like it. There is also a huge misinterpretation in those scales as being mostly linear, when they are most definitely not, a thinking that 50% in functioning means being able to do half of what a healthy person can do, when in reality it translates closer to being able to do barely 10%.

There are occasional hints of getting it, but those always fall apart rapidly. Anything that can't be objectively quantified falls apart to biases and agendas.

 

[ScoutB]

Low physical activity was defined as having a predominantly sedentary occupation and/or engaging in only 3–4 h per day of walking or standing, with no regular participation in organized leisure-time physical activities (e.g. fitness walking or exercise classes).

I get what they were going for, but it sounds like in theory their sedentary controls could walk for up to 4 hours per day? Apparently that's around 24,000 steps. Maybe I've just had OI for so long I can't remember normality, but even standing for four hours sounds like a lot.

 

[Felis Catus]

I get what they were going for, but it sounds like in theory their sedentary controls could walk for up to 4 hours per day? Apparently that's around 24,000 steps. Maybe I've just had OI for so long I can't remember normality, but even standing for four hours sounds like a lot.

When we had a step count challenge at work, only those who went for a walk or walked on a treadmill hit 10k in a day. 20k+ is like a day of intensive sightseeing in London.

There can be a lot of standing in a life without OI. Brushing teeth, having a shower, putting on clothes and shoes, food prep, waiting for a bus/tram/tube to get to work, standing during the commute, speaking to colleagues you bump into, queuing for coffee, queuing for lunch, whole commute back home, more food prep, etc. Then the weekend comes and it's time for standing while doing DIY, household chores, rearranging stuff on the shelves, standing in all sorts of shops, queuing for lunch, queuing in the post office, etc.

Here where I live, it was not a rarity for me to wait for a bus on the weekend for half an hour because there were too many people in the queue that they'd fill an empty double-decker, so I'd have to wait for another one. Taking a train to the nearest major city meant standing during the whole journey there and back, so that's already hours of standing in a day.

 

[rvallee]

I get what they were going for, but it sounds like in theory their sedentary controls could walk for up to 4 hours per day? Apparently that's around 24,000 steps. Maybe I've just had OI for so long I can't remember normality, but even standing for four hours sounds like a lot.

The overall evidence for exercise has turned out to be extremely flimsy, because it's based on unrealistic ideas about how people live, where activity can only occur in the confines of a planned exercise routine. I lost track of the number of times I've seen reports about how it turns out that a little exercise here and there is almost as good as a regular exercise routine, then go on to describe common activities of daily living that most people don't have a choice to do, and so easily meet.

The vast majority of people meet the low end of normal recommendations through simple daily living, walking to work, climbing stairs, carrying the lumps of meat and germs we call kids around, and so on. And that doesn't even take into account that a huge number of people have work that is physically demanding at a far higher level than even average recommendations for recreational exercise. Which is never taken into account, because although the emphasis is on the physiological benefits, it's clearly the recreational aspect that people enjoy the most, we can see that in the form of activity programs that are very low exertion, yet show most of the same 'benefits'.

A bit more would be preferable, but about half of everything I've seen or read out of exercise science is about optimal ways of exercising, which isn't really a thing as people need variety and strict routines usually turn into unpleasant chores, while the rest is mostly about how the low end of those recommendations are so low that while dedicating time for recreational exercise is good, it's absolutely not necessary.

Finding sedentary controls comparable to pwME is almost impossible, because normal living requires constant movement. Depending on what constitutes healthy. People in wheelchairs or with similar mobility problems that aren't considered as having an active disease process are probably the closest, and they obviously don't have the kinds of chronic symptoms that we do. But they would not be considered healthy controls.

In fact, despite all the "work will set you free" talk, it's actually mostly work that is the problem, since most people work sitting down, and go to work sitting down, and break for lunch sitting down, then rest from work sitting down, and so on. If work were removed from the equation, most people would be far more active than they are, and it's that sitting down for 10-12 hours per day that seems to be the main problem. Outside of that it's very difficult to be lazy enough, it doesn't even feel good anyway. It usually takes being limited by health problems to get there.

As always the problem is the usual bias towards magical thinking that pervades medicine. They want the solution to be in our hands, and that requires the problem to also be. It doesn't matter that it's clearly false, beliefs overrule everything.

 

[Sean]

They want the solution to be in our hands, and that requires the problem to also be.

They want the responsibility, and hence the blame for failure, to be in our hands, while they retain the power to define us and our health issues and lecture us from on high about how to handle them.