Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndro

[Murph]

https://www.ncbi.nlm.nih.gov/pubmed/29231037

Chronic Illn. 2017 Jan 1:1742395317746470. doi: 10.1177/1742395317746470. [Epub ahead of print]
Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves.
O'connor K1, Sunnquist M1, Nicholson L1, Jason LA1, Newton JL2, Strand EB3.
Author information
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.

DOI:
10.1177/1742395317746470

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I'd really like to look at the whole paper and very cross I can't make sci-hub work any more. I can load the site by pasting one of these into my address bar: 80.82.77.83 or 80.82.77.84; and I can input doi strings. But then nothing happens. If anyone else can make sci-hub work, and download the paper, then upload via the upload a file button, I'd be very grateful!

 

[voner]

@Murph, sci-hub has been modifying it’s web address on a frequent basis lately. this one worked for me for accessing the paper ...who knows for how long, though.....

https://sci-hub.la

 

[Murph]

thanks @voner

 

[Murph]

"
Overexertion may counteract the benefit of higher energy levels. Previous research links overexertion with lower Physical Functioning, Role Physical, and Vitality scores.5,10 Energy envelope maintenance may be especially beneficial for individuals with higher available energy who are pushing themselves beyond their energy limitations.

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

This was a big study with hundreds of patients and it has found good evidence for pacing.

The way the data is presented in the paper is appalling though. tables of numbers rotated 90 degrees to the main text? scatter plots or gtfo!

 

[Jesse2233]

Good old Lenny Jason codifying another important reality into a paper

 

[Tom Kindlon]

https://twitter.com/i/web/status/947235078639321089

https://twitter.com/i/web/status/947236660491808769

 

[alex3619]

The way the data is presented in the paper is appalling though. tables of numbers rotated 90 degrees to the main text?

Usually for an online paper you can select the tables or images for separate view, and they should be fine in this view. I will test this if I can read the paper.

Edit: table 3 is not viewable as a separate document.

 

[alex3619]

Future research should examine energy maintenance and available energy by utilizing longitudinal and experimental designs.

To that I would add an absolute requirement for objective measures, but that means actually measuring patient function and cannot be done online or on the phone.

 

[duncan]

Jason should get it by now, but he doesn't appear to.

 

[RogerBlack]

To that I would add an absolute requirement for objective measures, but that means actually measuring patient function and cannot be done online or on the phone.

You can make a damn good stab at it.
'Are you feeling better now', 'has your fatigue improved', 'are you sleeping better' are terrible questions.

'Did you go out of the house yesterday', 'What is 222/4' (timed), 'did you go to work/school yesterday', as well as various cognitive tests that can be done over the phone.

There are meaningful yes/no questions about objective facts that can be asked, which inform on the patients wellbeing and they actually have to lie in order to mislead.

Versus subjective questions that can be disturbed by mood or wanting to please.