Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome (2017) O'connor et al.

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MeSci

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http://journals.sagepub.com/doi/abs/10.1177/1742395317746470

Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves

Kelly O'connor(1), Madison Sunnquist(1), Laura Nicholson(1),
Leonard A Jason(1), Julia L Newton(2), Elin B Strand(3)
1 Center for Community Research, DePaul University, Chicago,
IL, USA.

2 Newcastle University, Tyne and Wear, UK.
3 Oslo University Hospital, Oslo, Norway.

Abstract

Objective

The Energy Envelope Theory of myalgic encephalomyelitis and chronic fatigue syndrome postulates that individuals with myalgic encephalomyelitis and chronic fatigue syndrome may experience some increase in functioning if their level of exertion consistently remains within the limits of their available energy. Findings of several studies support this theory; however, the current study is the first to explore how an individual's initial level of available energy may influence the relation between energy envelope maintenance and level of functioning.

Method

The functioning, activity, and symptomatology of six groups of individuals with myalgic encephalomyelitis and chronic fatigue syndrome were compared. Groups were created based upon level of available energy (higher or lower) and energy envelope adherence (underextended, within, overextended).

Results

Results indicate that, as expected, individuals with myalgic encephalomyelitis and chronic fatigue syndrome who had higher available energy also had better functioning than individuals with lower available energy; however, this relation was less pronounced for individuals who were overexerting themselves.

Discussion

These results are consistent with the Energy Envelope Theory, and they suggest that overexertion was particularly impactful for individuals with higher levels of available energy.

Keywords: Myalgic encephalomyelitis, chronic fatigue syndrome, energy envelope, pacing, energy
 
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http://journals.sagepub.com/doi/abs/10.1177/1742395317746470

I haven't been able to get the full text.

I'm trying to get my head around what they are saying. I find the abstract very vague.
Are they saying that people who have a bigger energy envelope can function better than people with a smaller envelope, which seems a statement of the bleedin' obvious.

Are they also saying that if you have a big envelope but push beyond it, your functioning goes down, but that this isn't true if you have a small envelope. That's very confusing.
 
Trish said:
I'm trying to get my head around what they are saying. I find the abstract very vague.
Are they saying that people who have a bigger energy envelope can function better than people with a smaller envelope, which seems a statement of the bleedin' obvious.
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It seems like an endorsement of both patient self-appraisal of their limitations, and pacing instead of pushing boundaries.
 
These results are consistent with the Energy Envelope Theory, and they suggest that overexertion was particularly impactful for individuals with higher levels of available energy
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I have one possible interpretation of the above statement, based only on my own experience. During my early ME years, I consistently felt absolutely dreadful, but I also did quite a bit more (both cognitively, and physically) than I do now. Overexertion didn't make my symptoms significantly worse. They were probably already at my "worst set point" most of the time.

These days, I definitely understand the concept of PEM better. If I live within my limitations, I don't experience as many symptoms, and don't feel nearly as bad, as I previously did on a daily basis. But, I am also doing very little. So, if I overexert, I have much further to fall. These days, the difference between my best and worst days is huge. Although I am glad I can limit experiencing the severe symptoms from my past, it is frustrating that this comes with the price of not having much of a life.
 
Only read the initial post so far, and so far as that goes it sounds sensible to me.

I said in another post recently that my wife seems to have good instincts with her pacing, somehow knowing how to mostly stay within her "energy envelope", or at least not push to far outside of it.

The Results seem to say that if PwME push (or are pushed!) beyond that limit, then it is counterproductive, and their functioning suffers.

The Discussion possibly touches on why something like GET might transition PwME who are mild/moderate into more severe?
 
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MsUnderstood said:
I have one possible interpretation of the above statement, based only on my own experience. During my early ME years, I consistently felt absolutely dreadful, but I also did quite a bit more (both cognitively, and physically) than I do now. Overexertion didn't make my symptoms significantly worse. They were probably already at my "worst set point" most of the time.
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This has been my experience too.
 
The Energy Envelope Theory sounds like basic common sense, and what PwME have learned to do well, and have been trying to tell doctors for decades. Stay within their energy limits, whilst doing what they can within those limits, and PwME will function as best they are individually capable. Obviously those with better energy availability will manage better than those with less - but the key is learning to know their own individual limits, and tailoring their pacing to match those limits. My wife has been doing this for years.
The Energy Envelope Theory posits that individuals with ME and CFS who expend an equivalent amount of energy to the amount they have available can reduce symptom flares and make modest gains in physical functioning.3,9–11 This theory suggests that individuals with ME and CFS should avoid over- and underexertion.
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Studies that examine the impacts of overexertion provide further evidence for the Energy Envelope Theory. Jason et al.5 examined the relationship between energy envelope maintenance and functioning in a sample of 110 individuals with ME and CFS. Findings indicated that overexertion was associated with increased disability, pain, fatigue, depression, anxiety, problems sleeping, and poorer quality of life.5
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Several studies provide supporting evidence for the Energy Envelope Theory. A case study analyzed daily data from an individual with CFS over a 16-month period.11 The participant was asked to rate their levels of fatigue, available energy, and expended energy each day, and wore an ActiGraph monitor to objectively measure energy expenditures. Initially, the participant expended more energy than that available and reported high levels of fatigue.11 However, as the participant began to reduce daily energy expenditures to align with levels of available energy, the participant reported less fatigue and greater available energy. By the end of the study, the participant reported sustained reductions in fatigue and more available energy.
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Trish said:
Are they also saying that if you have a big envelope but push beyond it, your functioning goes down, but that this isn't true if you have a small envelope.
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I don't think that is what they are saying (but not sure). I think it may be more like, if you have more energy to start with you have farther to fall.
 
Trish said:
I'm trying to get my head around what they are saying. I find the abstract very vague.
Are they saying that people who have a bigger energy envelope can function better than people with a smaller envelope, which seems a statement of the bleedin' obvious.
Click to expand...
I think it's a bit deeper than that. I think it is saying that if people can learn to operate sensibly within their energy availability limits, then they will remain better functioning (i.e. not crash so badly?). i.e. Sensible pacing.
 
I find this paper useless. Not much to be learned from it. We’re not even sure what they mean by it...
 
One of the difficulties with managing an energy envelope is that it's ever-shifting. Some days I have a bit more strength or last a few minutes longer doing basic self-care or a few household chores. Other times, even after lovely rest and NO discernible reason, I'll have a day of no function. I'm convinced the illness has a life-cycle of some sort (although it isn't consistent) because no matter how carefully I pace or try to establish a baseline, it still provides unpredictable ups and downs.
 
Dancer said:
One of the difficulties with managing an energy envelope is that it's ever-shifting. Some days I have a bit more strength or last a few minutes longer doing basic self-care or a few household chores. Other times, even after lovely rest and NO discernible reason, I'll have a day of no function. I'm convinced the illness has a life-cycle of some sort (although it isn't consistent) because no matter how carefully I pace or try to establish a baseline, it still provides unpredictable ups and downs.
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Exactly so. This is why the notion of energy envelope makes sense, because it is about your energy envelope at any particular time, and pacing within it accordingly.
 
I've had a look through the full paper, thanks @Woolie.
It is a good counterargument to GET based studies. Answering my question from earlier in this thread, I found this about severely affected patients that particularly interested me.

''Results also indicated that individuals with lower available energy who were underexerting had better physical functioning scores than individuals with lower available energy who were within their energy envelope. These results suggest that underexertion may be beneficial for individuals with particularly severe energy limitations. This finding contradicts the argument that reducing activity causes symptoms to worsen via deconditioning.''

So what they are saying, if I understand it correctly, is that severely affected patients are better staying well under their perceived energy envelope.

I wish I could! I'd need a full time carer - and one who didn't require to be instructed on what needed doing and supervision. At least it makes me feel I am doing the right thing in trying to provide that level of care for my daughter, and not pushing her to try to do more. (Sorry, too much information.)
 
Trish said:
''Results also indicated that individuals with lower available energy who were underexerting had better physical functioning scores than individuals with lower available energy who were within their energy envelope. These results suggest that underexertion may be beneficial for individuals with particularly severe energy limitations. This finding contradicts the argument that reducing activity causes symptoms to worsen via deconditioning.''
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That makes sense. When you are ill you must not push the boundery.
 
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