Energy Envelope in Chronic Fatigue Syndrome by Cort Johnson
The most important “treatment” is to pace
yourself by resting frequently, set reasonable limits on your activity, and stay
physically active (but not so active as to trigger a flare).
Dr. Lapp
The Energy Envelope theory is founded on the idea that ME/CFS patients have a
kind of physiological ‘safety’ zone available to chronic fatigue syndrome
patients. It’s different for each person
and is largely defined by how much activity you engage in.
Partaking in too much
mental or physical or even emotional activity will push you outside that zone
stressing your system to the point at which it fray’s causing your symptoms to
increase. Staying within that zone, on the other hand, will
hopefully give your body the opportunity to help heal itself or at least not
suffer further damage.
Two chronic fatigue syndrome experts from differing backgrounds (Staci Stevens -
exercise physiology, Dr. Ken Friedberg - psychology) assert that most ME/CFS
patients are doing too much.
Banking on It – The energy envelope
relies of four central concepts:
“Pace yourself. It’s the single best thing
anyone can learn to do.”
Dr. Nancy Klimas - People with CFS have a
certain (limited) amount of energy that they can use safely
- Using up your safe stores of
energy triggers a reaction in the body that results in worsened health.
- Not using up your
‘available’ energy may help your body to heal at least to some extent.
- You can affect your energy
stores by adjusting the amount and type of mental, physical and emotional
exertion you engage in.
The Complications of Post-Exertional
Malaise - It doesn’t help
that the unique kind of fatigue found in chronic fatigue syndrome (ME/CFS)complicates the task of finding your energy envelope. While
fatigue for most people is more or less immediate – that is, it directly
corresponds to the activities they just engaged in and usually resolves fairly
quickly the fatigue in ME/CFS is ‘delayed and prolonged’.
This means it can take from hours to days for the severity of the symptoms
triggered by an activity to peak, leaving the patient unsure as to which event
triggered it.
Roadblock - Initiating New Lifestyle Patterns
Lifestyle I: Foundation
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Breaking lifestyle patterns can be brutally difficult even when your body is
screaming at you to stop. There are many reasons most ME/CFS patients are living
outside of their physiological safety zones; financial
reasons preclude many from cutting back at work enough. The desires to
contribute or to not to be a burden are powerful ones that are inevitably caught
up in our feelings of self-worth.
Men’s sense of
self-worth, in particular, is caught up in their ability to produce.
Having a man to go from being a bread-winner or co-bread-winner to being
dependent can be an absolutely wrenching adjustment. Women,
on the other hand, find it difficult to cut back on their typical care-giver
roles as well as their financial obligations. There are many compelling reasons for ME/CFS patients live outside of their
physiological safety zones.
Many higher-functioning ME/CFS patients may live almost
completely outside their energy envelope; constantly symptomatic but
not yet too ill to completely stop what they’re doing. According to two ME/CFS experts – both of whom have chronic
fatigue syndrome – most patients are doing too much.
"Many patients are in a state of denial regarding
their symptoms. They have to be in order... to meet the ordinary responsibilities of work and family”
Staci
Stevens, Exercise Physiologist
The problem is that doing so has costs on your health and well-being. While
some people with CFS may be able to push the envelope without demonstrably
worsening the CFS literature is rife with stories of people who pushed it too
far and ended up in worse, sometimes far worse shape.
On the plus side of the energy envelope are the improvements in health
that can occur by living within it.
A recent study found that when patients stayed within their energy
envelope that their fatigue severity scores plummeted and their physical
functioning score increased significantly. Importantly their ability to engage
in activities increased over time as they stayed in their energy
envelope. This indicates there is the potential not only for
your quality of life
but your health and thus your ability to function to increase using these
techniques.
Energy envelope techniques may not return you to your state of former but they
can definitely improve your health and quality of life.
The CFID’s and Fibromyalgia Self-Help Website
Hotpoint: the CFIDS and FM Self-Help course costs $20, lasts 6 weeks, is taught
by trained peer volunteers via e-mail, and is given four times a year. It
focuses on pacing but also address stress management, managing emotions, etc.
The best resource for finding your energy envelope is easily
the CFIDS
and Fibromyalgia Self-Help website created by Bruce Campbell, Ph.D. Bruce
Campbell created self-help programs for chronically ill patients before he
became ill. After he became ill he created a self-help
program designed specifically for chronic fatigue syndrome patients.
Bruce Campbell recovered using the techniques found on his website, in his book
“The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia” and on his
online course. In
these venues Dr. Campbell walks patients through time-tested ways of determining
the right amount and kind of activity for them. Among the many
different aspects he covers are pacing, activity forms, logs and diaries,
setting limits, activity plans, limiting relapses and other ways of managing
your activities for better health.
The website contains numerous logs people with ME/CFS can use to create a
healthier, more harmonious lifestyle.
Don’t Lose Your Marbles – the Marble
Model - In a Personal Guide to Living Well With Fibromyalgia Linda Frame
offers another way of looking at the Energy Envelope concept. Picture your
available energy each day as a bowl of marbles . Each marble represents a bit of
energy. Determine how many marbles each task will take and
then plan your day so that you have some marbles left in the bowl.
If you feel inclined, it’s helpful to actually get a bowl of marbles and
do this each day.
Hotpoint In a recent 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.
Giving Other Treatments The Chance to Work
Staying within your ‘energy envelope’ may be an important factor in
giving other treatments to work. Dr. Lerner believes lthat staying within ones
physiological safety zone is important in the success of the antiviral therapy he uses. Certainly the effects of
pushing yourself out of your energy envelope are clear to see. Push yourself
into a flare and besides feeling exhausted your pain levels will probably
increase dramatically, you’ll likely feel irritable, experience mood swings,
have difficulty communicating, feel the need to isolate yourself, etc. Live
within your energy envelope on the other hand and you’ll not only feel better
but you’ll be more communicative, less moody and probably respond better to the
treatments that you’re trying. In short – staying within your
bodies physiological limits – helps everything.
This is not to say that living within this ‘envelope’ is guaranteed to get you
well. For many people it will lead to increased well-being
and an improved quality of life but not a cure; for a few lucky, though, it may
lead to health or set the stage for a return to health.
Dig Deeper! Finding Your 'Exercise' Safety Zone
"My guess is that any new effective treatment will require lifestyle
adjustments to get the best result."
Dr. Ken Friedberg, author, ME/CFS Patient
Books