Physical activity intensity but not sedentary activity is reduced in CFS and is associated with autonomic regulation, 2011, Newton et al

So many problems in a few sentences. First PEM is described as something that can happen, not something that is guaranteed to happen with sufficient exertion.

Then after finding that patients aren't much different from controls in terms of activity levels, they still propose "debilitation" and "sudden and unmonitored" increase in physical activity as explanation for PEM.

If they listened to patients they would find that PEM isn't triggered only by sudden increases in activities in deconditioned patients. It can be triggered by doing a little too much every day and having the effects accumulate, or cognitive exertion. It appears in physically fit people when they become ill. It's not as far as I know found in people who are just deconditioned or most other major chronic illnesses. And if it was caused by deconditioning the epidemiology of ME/CFS would be completely different and exercise would quickly cure patients and we wouldn't be having this discussion.

 

Has anyone seen the Fatigue Impact Scale?

We're all aware of the problem with scales/questionnaires that use vague terms such as "fatigue" or "tired" that can be interpreted in different ways by patients, interpreted in yet other way by researchers and then treated as though they are definitive, easily measured and that those measurements can be accurately compared between patients and between two different points in time.

 

From a quick Google search - a short article by Frith and Newton on Fatigue Impact Scale: https://academic.oup.com/occmed/article/60/2/159/1423839#21390853

Requires signing User agreement for access and the link given in the references no longer seems to work.

There is a Fisk Fatigue Impact Scale listed on the forum here (is it the same thing?): https://www.s4me.info/threads/questionnaires-and-scales-used-in-me-or-cfs-research.879/ but again the link doesn't work.

There appears to be a shorter modified version for MS

 

Fukuda case definition, the selection criteria used in this study does not include post exertional malaise (PEM), as a must have to meet the definition of ME/cfs.

PEM is required in the 2015 Institute of Medicine (now the National Academy of Medicine) case definition of ME/cfs.

 

Amazing that the control group was not much different in activity than the group that qualified as having ME/cfs by Fukuda standards. Not in my household.

The more generalized case definitions such as Fukuda, may tend to select people with milder forms of ME/cfs. Some of the sick participants may not even have had ME/cfs.

 

Attached. Not quite as bad as, say, HADS, but some questions are problematic in the context of ME, particularly those that involve the "I am less motivated" construction, e.g. q21 ("I am less motivated to do anything that requires thinking"). I'm certainly motivated to; my body just won't allow it...

 

@Hutan

Good points about the weight discussion.

That's of course a popular myth pushed by the BPS Movement: the reason people have ME is because they are overweight, and by extension lazy.

If this is such a simple cause and effect, how would they explain overweight people who do not fit even the most vague ME case definition? If being inactive and overweight caused ME, the ramifications would be stunning.

 

Thanks @Nightsong!

Yep that would be a misleading and problematic one for me.

My primary cognitive problem is loss of processing ability fatigue becomes apparent when I struggle on & keep.pushing harder to.make up for loss of processing ability. For some questions this would mean I am answering yes, but not because of fatigue but a different primary symptom.

The question regarding clumsiness for example, I do become more clumsy but this happens before fatigue sets in. So again, yes, but not because of fatigue, fatigue comes later.

I don't think this scale is appropriate for ME/CFS, at least as I experience it.

 

If 21% of the "CFS" group did >10K steps per day then there are too many potential serious issues to bother reading any further. This is honestly very poor research. Is this the Julia Newton who will be part of the Cochrane IAG? Good grief.

 

If the weight distribution of the sick and the well were significantly different then the results of the study would be even less reliable than they currently are. I'm not knowledgeable on research methodology but I'm fairly sure that sick and well groups are supposed to be well-matched. So mentioning the weight factor at all comes across as just plain nasty.

 

How could the ones who achieved 10000 steps a day be classes as sedentary?

More and more, I do not think that sedentary people are good controls for us. I do not think I can be alone in this. Most of the people I know that I would class as sedentary are slow in their movements and do not like being active very much.

I was always busy (even after I became ill) and I still move briskly, well maybe not now as my legs don't work, and I keep busy if I get a little time feeling better.

It makes me wonder if sedentary people have a measured usage of energy whereas we can be like active people but keep stopping as the energy runs out. Our metabolism (if that's the word) is not what they think.

 

The US patient group decided to do a survey a while back where they asked people what their weight was. It was meaningless as they did not ask what people's weight was when they got ill which is the only thing that is relevant.

 

I think I said this on another post: I've known people who are fairly sizeable, who aren't wiped out physically and mentally by a few hours out and about. Or cleaning their house, or most if not all activities of daily living.

PwME are.

 

Absolutely. I know people who are fit and exercise /play sport regularly yet are still quite overweight. Not necessarily to the extent of being morbidly obese or anything but carrying at least an extra stone or more.

It also puts me in mind of the recording made by Sophia Mizra when she was being forcibly removed from her home. One of the conditions her social worker had put on her was that she needed to lose weight - something she was apparently supposed to somehow achieve while severely ill and bedbound. You can hear poor Sophia trying to reason with them and tell them she had managed to lose a little weight.

Some of us gain weight and that may be partly due to be restricted in the foods available because of difficulty shopping and prepping etc. We don't know for sure of there is a metabolic reason just as those with hypothyroidism tend to gain weight.

On the other hand, some lose weight and simply can't keep it on, despite facing the same difficulty with food acquisition and prep. Again there could be some underlying metabolic reason just like in hyperthyroidism.

Whether or not a person gains or loses weight is quite possibly a downstream effect. This level of assumption around weight could well be akin to assuming the sun rotates around the earth.