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

Discussion in 'PsychoSocial ME/CFS Research' started by Hutan, Jun 2, 2021.

  1. Hutan

    Hutan Moderator Staff Member

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    J.L. Newton 1
    J. Pairman 1
    K. Hallsworth 1, 2
    S. Moore 1,2
    T. Plo TZ 3 and
    M.I. Trenell 1, 2

    1. UK National Institute for Health Research Biomedical Research Centre in Ageing & Age-related Disease, Institute for Ageing and Health, Newcastle University, Newcastle, UK,
    2. MRC Centre for Brain Ageing & Vitality, Newcastle University, Newcastle upon Tyne and
    3. School of Computing Science, Newcastle University, Newcastle upon Tyne, UK

    Free access

    Abstract
    Background: Chronic fatigue syndrome (CFS) is a common debilitating condition associated with reduced function and impaired quality of life. The cause is unknown and treatments limited. Studies confirm that CFS is associated with impaired autonomic regulation and impaired muscle function.

    Aim: Define the relationship between sedentary behaviour, physical activity and autonomic regulation in people with CFS.

    Design: Cohort study.

    Methods: Physical activity was assessed objectively in 107 CFS patients (Fukuda) and age, sex and body mass index (BMI)-matched sedentary controls (n = 107). Fatigue severity was determined using the Fatigue Impact Scale in all participants and heart rate variability performed in the CFS group.

    Results: The CFS group had levels and patterns of sedentary behaviour similar to non-fatigue controls (P > 0.05). Seventy-nine percent of the CFS group did not achieve the WHO recommended 10000 steps per day. Active energy expenditure [time >3 METs (metabolic equivalents)] was reduced in CFS when compared with controls (P < 0.0001). Physical activity duration was inversely associated with resting heart rate (P = 0.04; r2 = 0.03), with reduced activity significantly associating with reduced heart rate variability in CFS. There were no relationships between fatigue severity and any parameter of activity. Thirty-seven percent of the CFS group were overweight (BMI 25–29.9) and 20% obese (BMI >=30).

    Conclusion: Low levels of physical activity reported in CFS represent a significant and potentially modifiable perpetuating factor in CFS and are not attributable to high levels of sedentary activity, rather a decrease in physical activity intensity. The reduction in physical activity can in part be explained by autonomic dysfunction but not fatigue severity.
     
    Last edited: Jun 2, 2021
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  2. strategist

    strategist Senior Member (Voting Rights)

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    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.
     
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  3. Hutan

    Hutan Moderator Staff Member

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    This is particularly nasty, suggesting in the abstract that people with CFS are somehow causing their ill health by being overweight. Nowhere in the paper are the percentages for healthy controls given. There's just that brief comment that the control groups' weights were not significantly different to those of the CFS sample.

    This CFS sample: 37% overweight and 20% obese = 57% overweight or obese
    2019 UK adult population : 36.2% overweight and 28% obese = 64.2% overweight or obese

    These aren't great results for health of course, but, even allowing for the UK population getting more obese over the last 10 years, in no way can the 2011 CFS sample be said to be more fat than average.
     
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  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    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.
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    THIS!
     
  6. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

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    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
     
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  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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.
     
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  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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.
     
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  9. Nightsong

    Nightsong Established Member (Voting Rights)

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    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...
     

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  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @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.
     
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  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Thanks @Nightsong! :thumbup:

    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.
     
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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    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.
     
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  14. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     
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  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    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.
     
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  16. Aslaug

    Aslaug Moderator Staff Member

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    And weight alone doesn't say anything about body composition. I've lost weight the last few years, muscle has been exchanged for fat, but I can still wear the same clothes so it's hard for people to see.
     
  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    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.
     
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  18. Hutan

    Hutan Moderator Staff Member

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    Thanks Nightsong. I think there is probably a problem of ceiling effect and clustering. In this group of only mildly affected people, probably few would tick the 'extreme' level, but most would be feeling that they have pretty significant problems with a lot of the items on the scale.

    I mean, for example, when your brain has worked well before, a whole range of reduced function can feel like a big deal. I'm not at all surprised that they did not find a relationship between physical activity and fatigue - the questionnaire isn't set up to allow that.

    It's sad to see the very basic error of cause and effect:
    Their idea seems to be 'people with CFS have low levels of physical activity, so, if we change that, they won't have CFS'. When of course, the low level of physical activity is a result of the CFS. Only people who don't listen to patients, who don't observe patients, who can't even notice from the data in this study that people who are fairly active still have ME/CFS, could make that mistake.
     
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  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    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.
     
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  20. Aslaug

    Aslaug Moderator Staff Member

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    I would love more research into this.
     

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