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Activity Management - The Crucial Element?

 

 

 

 

 
Cort Johnson

Phoenix Rising - Cort Johnson's Column

...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.

 


 

 

 

 

 

 

 

 
 
Cort Johnson publishes the free Phoenix Rising newsletter and runs the website of the same name. An ME/CFS sufferer himself, since 2005 he has used his keen intellect to follow the latest developments in ME/CFS research and treatment and translate the often complicated concepts into language that the layman can understand. An active advocate Cort has been participating vigorously in the Campaign for a Fair Name to get CFS recognized as ME/CFS.

 

 
 

 

Tuesday, July 28th, 2009:

 

Activity Management - The Crucial Element? - Energy Envelope Therapy Produces Results

 

A Presentation by Dr. Leonard Jason - IACFS/ME Conference 2009

 

by Cort Johnson

 

 

It’s crystal clear that there are negative consequences to pushing outside one’s ‘energy envelope’. But it’s been less clear whether the benefits of staying inside that envelope translate to more than simply ‘feeling better’. Can rigorously attending to one's energy envelope actually improve one’s health in a measurable way? Could a sojourn inside that energy envelope actually allow some patients to recover enough energy to return to health?

 

Not surprisingly, Dr. Jason is at the forefront of this question. In the last year he’s engaged in a number of fascinating studies that have examined how effective ‘lifestyle management’ programs can be and who benefits from them. In some ways his presentation may have been the most important of the conference. The WPI and others have raised hope for the future but it will take some time for their achievements to impact the ME/CFS patient on the ground. Dr. Jason is exploring issues that can affect ME/CFS patients right now.

 

Mind:Body? Or is it Body:Mind? In the beginning, behavioral therapists suggested that people with chronic fatigue syndrome differ little from healthy people in a physiological sense but that they’re quite different psychologically; they’re either too absorbed in their symptoms or they’re depressed or anxious - i.e., if you could just get them to stop focusing so much on their problems, they’d get well.

 

Dr. Jason appears to believe that those early CBT practitioners were putting the cart before the horse. Rather than the mind driving the body, it may be that the body is driving the mind. All those symptoms (that anxiety, that depression. . .) are what occur when patients transgress their physiological capabilities. His research is putting stress reduction therapies into a physiological context rather than a psychological one. Instead of suggesting that ME/CFS patients are mental basket cases he’s proposing that they’re rather courageous individuals (yes, he did say ‘courageous’) bucking up against an impaired physiology that greatly limits their choices.

 

He proposed that, instead of cycles of maladaptive behavior driving their limitations, there are actual physiological limits to what ME/CFS patients can achieve. Once they get outside of that activity ‘safety zone’ they encounter increased levels of oxidative stress, and neuroendocrine and immune problems that cause their symptoms to flare up again.

 

His thinking is clearly borne out by increasing evidence that if you push ME/CFS patients too far in any way – physically or psychologically – in the street or in the laboratory – their systems are going to behave abnormally. (We’ll see a call go out later in the conference that all studies essentially thrust patients into a crash state before they measure them. That’s not happy news for ME/CFS patients undergoing those tests but it does indicate that the scientific community is beginning to get a critical message about ME/CFS.)

 

Looked at in this light, instead of correcting patient's maladaptive thought patterns, cognitive behavioral therapies and other types of stress reduction approaches are doing nothing more than reducing stressful inputs and relieving the strain on an overworked system and allowing it to heal at least somewhat.

 

Don't Use It - Don't Lose It - The envelope theory is perfect for Dr. Jason’s studies. It relies on the idea that there’s only so much juice in a chronic fatigue syndrome patient's batteries. If you use that juice up it’s gone and needs to be built up again, but if you don’t use it up it can actually build up over time. In his study Dr. Jason had chronic fatigue syndrome patients use envelope theory techniques and recorded their symptom levels. His graphs vividly showed that as ME/CFS patients use up their energy their symptoms rise dramatically. On the other hand, when they were using the energy envelope techniques not only did their symptoms drop – dramatically – but over time their overall level of activity increased. Here was vivid evidence that lifestyle management techniques can pay off in improved health.

 

A Ceiling and A Floor - None of the patients were well at the end of the study but many had improved their physical activity levels by 50%. A reduction in the level of inflammatory immune cells suggested that incorporating energy envelope practices (activity/symptom logs) had reduced inflammation as well.

 

One group of patients, however, didn’t benefit significantly. This group, which appeared from their lab tests, at least, to be sicker, had increased immune dysfunction and low cortisol levels. People with normal cortisol levels found that their fatigue and anxiety decreased ‘significantly’ but those with low cortisol experienced virtually no benefit.

 

The authors did not speculate why low cortisol played such a fundamentally important role but it’s intriguing that low cortisol levels are found in a number of ‘stress-response’ diseases with high rates of mood disorders such as fibromyalgia, post-traumatic stress syndrome, chronic pelvic pain as well as rheumatoid arthritis, allergies and asthma.

 

The study brings up a host of questions. Are the 30% or so of ME/CFS patients who don’t benefit much from behavioral techniques being blocked from doing so by low cortisol levels? Would hormone therapy enable them to benefit?

 

The study also demonstrates that energy envelope therapy can be quite effective in improving one's quality of life and to some extent one's health.

 

 

Read more at Phoenix Rising

 

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