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Jason 2013 Energy conservation/envelope theory interventions

Discussion in 'Latest ME/CFS Research' started by Roy S, Jan 16, 2013.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    http://www.tandfonline.com/doi/full/10.1080/21641846.2012.733602

    Energy conservation/envelope theory interventions

    DOI:10.1080/21641846.2012.733602 Leonard A. Jasona*, Molly Browna, Abigail Browna, Meredyth Evansa, Samantha Floresa, Elisa Grant-Hollera & Madison Sunnquista

    Publishing models and article dates explained
    Received: 05 May 2012
    Accepted: 08 Aug 2012
    Version of record first published: 14 Jan 2013

    Abstract Objectives:

    Treatment approaches for patients with chronic fatigue syndrome (CFS), Myalgic Encephalomyelitis (ME) and Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been controversial. This paper provides the theoretical and conceptual background for the Energy Envelope Theory to assist patients and reviews evidence of its treatment efficacy.

    Methods:


    Over a 15-year period, efforts were directed to develop a non-pharmacologic intervention that endeavored to help patients to self-monitor and self-regulate energy expenditures and learn to pace activities and stay within their energy envelope.

    Conclusions:

    Studies show that the energy envelope approach, which involves rehabilitation methods, helps patients pace activities and manage symptoms and can significantly improve their quality of life.

    Full text: http://www.tandfonline.com/doi/full/10.1080/21641846.2012.733602
     
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  2. Firestormm

    Firestormm Guest

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    Thanks Roy. I am sure this paper and review will appeal to many on this forum:

    It then goes on to discuss the possible reasons why patients are not benefiting as they might from interventions such as CBT (mentioning the Netherlands approach) and CBT with GET.

    All builds up to compare the 'envelope theory' with these other options. I need to read through it all more carefully. Am not in the right 'zone' at the moment.

    Still the conclusion speaks for itself and was well worth struggling through:

    * I am wondering if this arousal state is caused by adrenalin. This was mentioned (adrenalin) yesterday by I think Klimas in that talk she gave. Had something to do with exercise. Am not overly familiar with Kindling. Will have to have a read.
     
  3. lnester7

    lnester7 Seven

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    I can't have an envelope, My levels changes EVERY DAY is different, some days I do more and surprise myself then if I try that some other times It crashes me. Is very hard when you are shifting the mental and the physical energy as they come from he same envelope. If you do mental work you have less physical energy, but how much is left is a mystery.

    I think we need a little portable device that will monitor X, HR, Cerebral profusion...? Or maybe acid levels or whatever the heck can be measured in CFS. OR whatever is it that this exercise people measure, I know they can tell when I did too much (I think when u start producing more Dioxide carbon than oxygen intake (something like that). Then we all have data to go by. Also we can study statistical patterns....

    I would also love to say to my boss Oh I can't do that because I have no energy left on my envelope!!! So If a Doctor recommend this, better have a note we can use as backup for pacing.
     
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  4. Jenny

    Jenny Senior Member

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    Me too.

    Jenny
     
  5. Valentijn

    Valentijn Activity Level: 3

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    Ooer, our Tom is famous and getting all quoted and such! :thumbsup:
     
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  6. alex3619

    alex3619 Senior Member

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    The envelope is not meant to be static, if this fits with old discussions of envelope theory - I have not fully read this paper yet. Its the perceived limitation in energy, and the idea is to stay within it. Its a lot like pacing, or perhaps and extension of pacing. I might have to go back and read a lot more on this.

    The kindling idea is that nerves/neurons can get sensitized by excessive stimulus and learn to over-react.

    Adrenaline features in my latest attempt to understand our symptoms. In tracing many paths I keep finding that a whole lot of them cluster at the chemical phosphodiesterase 4. So do symptoms. I might advance my blog on this as its becoming more relevant.

    Tom has shown the way - patients can have impact if we have the capacity to research and publish papers.
     
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  7. Enid

    Enid Senior Member

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    "Envelope" - well much publicised - I do use now but impossible when bedridden.
     
  8. Creekee

    Creekee Senior Member

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    I'm wondering about our overall relationship with adrenaline. It recently occurred to me that I'm really (really!) fond of that adrenalized feeling. When I get pressed, stressed, forced to overperform...I like that feeling of being amped up. Feels kinda like an addiction. Now I'm wondering if I subconsciously seek it out in a way that is unhealthy. And keep myself running on overdrive long after I should have stopped.

    Anyone else an adrenline junkie?
     
  9. Firestormm

    Firestormm Guest

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    Right. I am going to posit something else here. That of the olde 'fight or flight' notion advanced since the world began. This was - I seem to recall - a rather popular explanation for some of the symptoms and resulting incapacity that we might experience.

    It's popularity was from the psychologists - not the patients - funnily enough but is adrenalin involved with over-sensitivity/arousal and part and parcel of the aspect of the brain that could account for the 'fight or flight' system?

    What I am trying to say is, that how might this Kindling theory be accounted for by others (e.g. psychologists/psychiatrists) as being some kind of behavioural response/over-response? Because you can bet as much as you are able that they will take this theory apart.

    I need to read more about Kindling and the above paper more closely. You got any useful links, Alex? Thanks. If we are producing/demanding more adrenalin when we e.g. engage in activity and/or exercise - then this might account for the 'shakes' that are reported following varying amounts of activity and effort.

    If our systems - for whatever reason - are 'hyped' then the obvious solution would seem to be to calm that system down. Problem I see then is that if you administer drugs, or even prescribe this envelope theory, you could be exacerbating not only fatigue (as a side effect of calming drugs), but potentially keeping patients house and/or bed-bound.

    I don't mean that in a bad way - it's certainly preferable of course to forcing someone from bed for example when to do so would adversely affect their health - but even with the 'envelope theory' you are faced with the question of relativity - as with GET or indeed CBT.

    Appropriately applied Activity Management is to me the same - pretty much depending on interpretation - as this envelope theory. Indeed outside of any clinic I am willing to say that most patients - regardless of diagnoses - but suffering from a long term health condition that restricts their ability to engage in activity - will be practising this envelope theory. There is also a (weak) argument to say that envelope theory is mere common sense for everyone - patient and non-patient alike.

    In clinic one generally sees (and at home with a home-delivered service) a more structured approach. A delivery of a mutually agreed programme that should fit within one's daily levels of necessary activity. On another thread we were treated to some anaerobic exercises recommended for MS. And this is the kind of thing one might expect from for example a physiotherapist.

    To endorse this envelope theory is perfectly fine but it lacks the kind of structure that clinicians will want to see. It is too much like a doctor saying to a patient after six months that the only advice I can offer is to rest. A clinic and doctor will want to offer more than saying only do what you can when you can - even if this in effect what a patient does. You see what I mean? Sorry am probably not explaining this very well :)
     
  10. alex3619

    alex3619 Senior Member

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  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Then again, if our systems are wearing us out by keeping us 'hyped', calming that over-response could give us more energy.
     
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  12. Firestormm

    Firestormm Guest

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    Thanks Alex. And yep Bluestem, it could indeed. And that is presumably what the advocates for this treatment would advance. Am going to have a read of Alex's kind links and improve my understanding. Always useful :)
     
  13. justy

    justy Senior Member

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    One thing that comes to mind is that the idea of 'kindling' is close to the lightning processes theory of constant stimulation of the Amygdala and that patients need to learn to calm down that response to alow symptoms to subside. Surely the psychs could use this same idea to suggest that we are constantly over aroused due to some mental disorder and that this is causing physiological changes in the brain in this area and that by ignoring symptoms and gradually increasing activity we would again be 'retraining' our brains.

    Envelope theory though - it has helped me to pace and improve somewhat over a period of years. I believe that staying as consistent;y as possible within ones envelope will bring a slight and gradual improvement in functioning for many. But it is by no means curative - as jason himself acknowledges.

    Another thought - in the PACE trial i think they said that pacing alone was not helpful - in fact i think the psychs disagree with the notion of pacing as it makes us focus on symptoms too much. This research by Jason could show what ptients have been saying all along. Pacing= good. GET= bad.

    Sorry, just some rambles thoughts - havent read the paper.
     
  14. Firestormm

    Firestormm Guest

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    I wish they'd all simply agree on the same terminology!! :)
     
  15. alex3619

    alex3619 Senior Member

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    The kindling model is as yet unproven, like all the other models. It also does not explain many of the peripheral problems found. If this model has relevance, it is more likely to be a component of something more complex. However its in competition with many other models - though of course it might be valid for a subgroup even if others have something else wrong with them.

    What is different about kindling with respect to the LP is that it relies on a complex interplay of biochemistry, and much of that biochemistry is at least known to exist. Psychological treatments designed to calm us down might be able to affect that to a small degree, but are unlikely to prove curative or even substantially effective. They would be best used in addition to therapies aimed at the underlying biochemistry/neurology.

    However I can say that about biochemical models like the tenth paradigm (NO ONOO, Marty Pall). Anything involving neurlogical overstimulation is an issue that might benefit from training to calm us. However to correct the biochemistry will require dealing with many biochemical pathways and oxidatives stress.

    These "mental" therapies are more likely to be merely palliative, though in some cases this alone might be enough to get someone to the point where they can heal better - though I am sceptical about this I cannot completely dismiss the possibility. However none of them are likely to help the very severe patients in any way ... when I was at my worst meditation was beyond me entirely, and brain retraining - well I couldn't read, I couldn't handle speech or music, I could barely manage to walk - and the most ill patients are worse than I was. I cannot see how they could even participate in such training.

    In order to demonstrate kindling is the answer, they would also have to demonstrate that the neurological changes induce peripheral physical changes. That may not be easy to do.
     
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  16. Dolphin

    Dolphin Senior Member

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    The Kindling model is not the main point of the paper, in my mind. He has been looking at energy conservation/envelope theory interventions for the last 15 years. In most of these papers, kindling wasn't mentioned. Empirically the interventions can help, without necessarily knowing why.
     
  17. PhoenixBurger

    PhoenixBurger Senior Member

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    "Changes in skin or hair are gradual, he said. “If you do have a stressful event, nothing is going to happen right away.” Nothing visible anyway. Inside the body, the pituitary gland jolts the adrenal gland, just above the kidneys. Hormones start coursing. Adrenaline cranks up heart rates and blood pressure. Cortisol, another hormone from the same gland, causes inflammation and preps the body for converting sugars into energy.
    “It’s not intended that people would be chronically exposed to these levels,” said Sherita Golden, a physician at the Johns Hopkins Medical Bloomberg School of Public Health. Cortisol strains the circulatory system, battering artery walls. The hormone also thins the skin, makes muscles waste and bones lose mass. The immune system weakens, and viruses that cause colds and cold sores take hold. Sleep turns fitful.
    “Your cognition slows, you may feel more depressed, your ability to concentrate goes down,” Factora said. “And it just builds on itself — a real cascade.”

    The only known cure

    There is one known treatment: exercise. “It is the best benefit a physician can recommend,” Factora said. “There is no drug that can present as many benefits as exercise can.”

    http://on.digg.com/W0ZVYY

    Just a random possibly inapplicable article I ran across today. If you look at the time lapse of Obama's face, you'll see in 2011 he has a herpes outbreak as well. Bottom lip right side. Heavy ties to stress / fight-flight / chronic inflammation levels and activation of herpes viruses.
     
  18. alex3619

    alex3619 Senior Member

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    I agree Dolphin. I was just explaining a little more about kindling because some were asking about it. Envelope theory and pacing are closely related, and so far are probably the most cost effective therapies.

    As a side point, cortisol is an inflammatory and immune suppressor.
     
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