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

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

 

It seems like an endorsement of both patient self-appraisal of their limitations, and pacing instead of pushing boundaries.

 

Thanks! I knew I'd forget something...didn't have the brain to try to get the full text though - I'm sure some genius will figure it out!

 

Then they have not seen very severe patients.

 

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?

 

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.

 

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.

 

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...

 

But maybe it's intended for those who do still have much to learn from it. PwME are already well tuned in, but as we know most people without ME are not, especially those scientists who presume to impose there supposed "expertise" onto PwME.

 

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.

 

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.

 

@MeSci, thanks for posting. If you're still reading here, would you mind adding the link to the abstract to your opening post? Its helpful to have all that info in an easily accessible place.

This one:

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

 

I'm not sure this is technically allowed, but here is the fulltext (please note that posting this link might be a violation of the forum rules - I've reported myself - so be aware this post might need to be removed quite soon).

 

That makes sense. When you are ill you must not push the boundery.