A Chronic Fatigue Syndrome (ME/CFS) Lifestyle

“The things you do and the way you live have effects on your symptoms’”

Bruce Campbell, Founder – CFIDS/FM Self-Help Course, former CFS patient

A Chronic Fatigue Syndrome (ME/CFS) Lifestyle? – One of the central tenets of Buddhism is called ‘Right Living’  - a model of living designed to produce positive effects both for the person and in the world at large. It proposes that there is a ‘right’ lifestyle for people embarking on that particular type of spiritual journey.

Is there a ‘right lifestyle’ for chronic fatigue syndrome patients as well? A lifestyle which will allow them to achieve – within the confines of their illness – increased well-being and happiness? The evidence suggests that the answer to that question is an emphatic ‘Yes’

An appropriate lifestyle does not promise recovery but it does offer an opportunity for improved quality of life and health and, for some, substantial or even at times even near complete recovery. You can read about how some people did that in books such as Martha Kilcoyne’s ‘Defeat Chronic Fatigue Syndrome’ and Bruce Campbell’s ‘The Patients Guide to Chronic Fatigue Syndrome and Fibromyalgia” and in stories from Ashok Gupta, Lynne Matallana, Ken Friedberg and others.  All have experienced significant improvements in their health using these techniques. While not all patients will experience their degree of success many can receive substantial benefits.

All these people took  a ‘mindful’ approach to this disease. This is not to say that other treatments weren’t helpful  or critical to their success but each of them received substantial benefits from paying close attention to how they lived, acted and thought.

What kinds of practices are we talking about? Pacing, mindfulness practices, meditation practices, relaxation exercises and movement therapies. Because they all involve being mindful of the effects of our activities, thoughts and feelings on our physical well-being they can be referred to broadly as mindfulness practices.

Not Easy -A ‘mindful’ approach is  not particularly easy; progress is usually quite slow, occurs in small steps and sometimes requires substantial lifestyle adjustments.   The fact that these techniques don’t promise a cure will keep others away.

Some evidence suggests that people with low cortisol levels (and perhaps other findings?) may not receive as much benefit from these types of exercises as others. In fact it appears that some patients may not receive any significant benefits from. These practices have been shown to work well in chronic illnesses in general, but its possible that, given their concentration problems, that ME/CFS patients may have to work harder and be more diligent at them than usual to have them succeed. Still their usefulness is irrefutable; when they work they inevitably lead to a higher quality of life – and who doesn’t want that?

A Lifestyle That Doesn’t Work

  • Physical or mental exercise resulting in push/crash
  • Too much ‘thinking’
  • Engaging in multi-tasking
  • Working in a disorganized fashion
  • Emotional stress
  • Dwelling on what’s wrong, resistance to what’s so
  • Poor diet
  • Too little physical or mental exercise

Most evidence suggests that many chronic fatigue syndrome (ME/CFS) patients are doing too many activities that exacerbate their disorder and too few that ameliorate it. Many, in fact, most patients are probably too active for their own good and can experience increased feelings of well-being simply by cutting back  or engaging in different types of activities. Many are simply trying to ignore or plough through their symptoms. Few are paying attention to simple practices that could help take the load off their already overly stressed systems.

A Lifestyle That Works 

  • Enough physical activity to stay as fit as possible without symptom exacerbation
  • Working in staggered times; taking breaks
  • Working serially – one thing at a time
  • Accepting what’s so
  • Calm mind/calm body
  • Focusing on what’s possible instead of what’s not

Some Important Elements:

  • Mindfulness practices result in improvement; they are not a cure
  • Mindfulness practices require consistent practice and do not produce lasting results overnight
  • Different mindfulness practices produce different results from person to person
  • Mindfulness practices may not work for some people
  • The autonomic nervous system and HPA axis abnormalites present in chronic fatigue syndrome (ME/CFS) and FM suggest that mindfulness practices may be helpful in this type of disease.

The Goal

The goal of these practices is to enter into what Dr. Friedberg, a CFS patient, calls a ‘relaxation or R state’. These relaxing experiences are codified from lesser to greater to the right in a chart taken from Dr. Friedberg’s lifesytle manual for ME/CFS patients (“Seven Steps to Less Pain and More Energy‘). A variety of techniques can help you achieve this state.

Relaxation or ‘R’ States

  • Lightness or heaviness
  • Warmth or coolness
  • Pleasant tingling or numbness
  • Physical relaxation
  • Mental relaxation
  • Mental quiet
  • Sleepiness
  • Strength and awareness
  • Joy
  • Love and thankfulness
  • Prayerfulness

Some Techniques Used

  • Energy Envelope/Pacing
  • Mindfulness/Meditation/Visualization and other relaxation exercises
  • Amygdala Retraining, Lightning Process, Mickel therapy and others
  • Movement Therapies – yoga, Qigong, Feldenkrais

Each requires a degree of attention to the body and mind that few outside of spiritual disciplines ordinarily attempt. The abnormal stress response and the associated immune and other problems in ME/CFS suggest that paying attention to and dealing skillfully with stressors such as physical and mental activity, negative thoughts, disturbing body sensations,etc. can pay off in increased quality of life.

Neural Reprogramming – Essentially with these exercises we are trying to rewire the parts of the brain that are regulating the autonomic nervous system that are not working properly in ME/CFS.  The autonomic nervous system can be conciously retaught to regain some degree of more normal functioning. Research has shown, for instance, that it’s possible to reregulate processes as fundamental as our breathing and heart rates. Because the autonomic nervous system regulates immune functioning these exercises could have an impact on immune health as well.

A Critical Factor – There is one fundamentally important practice that precedes all others: pacing. Living outside of ones’ ‘energy envelope’, i.e. beyond one’s energy capacity – increases the difficulties of engaging in mindfulness activities greatly. Pacing – finding the correct level of mental and physical stimulation – plays an important role in determining how successful one is at this type of endeavor. Therefore next we turn to how to the foundation of any treatment program: finding one’s ‘energy envelope’.

8 comments

{ 7 comments… read them below or add one }

Robert May 9, 2012 at 2:59 am

Intu-flow is basically a life saver here as a way to make the body function.
It takes about 4 months doing a 5 minute routine daily to have the big effect kick in.
I have no pain in my joints now or muscle tendons after a workout or long day and my recover rate has improved.

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Cort May 9, 2012 at 4:50 am

Thanks for the tip Robert and congratulations on your success :). I’ll check it out.

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Robert May 9, 2012 at 4:54 am

I been ill 12 years now, I can sleep at night even when working out since the inflammation in muscle joints and tendons simply dosnt happen now due to doing Intu-flow. I tried to test to not do so much and the muscle inflammation returned at night which wakes me up and painkiller is needed.
I also have fixed a lot of old injuries and for me tis a life saver.
its no quick fix though but doing a 5 minute thing every day is simply for me a good easy thing to do. overall energy level has increased but as far my sickness remains.

andy May 27, 2012 at 8:40 pm

What is intu-flow?

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Cort June 2, 2012 at 11:14 am

Intu-flow is a kind of slow moving exercise program http://www.amazon.com/INTU-FLOW-Moderate-Sustainable-Pain-Free-Longevity/dp/B000M9BU2Q purported to allow people to exercise more without injury.

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jaywalker September 1, 2013 at 7:09 am

I’ve been ill long enough to find out the importance of pacing myself.

I think there is one major problem with this approach though: one has to live outside of normal society to practice it! As soon as you’re connecting with others – especially within a work enviroment- there’s an irresistable conformity pressure. And of course , the more successful you are at regaining health, the greater this pressure will be.

A lot of people here have had enormous problems in claiming necessary Welfare, and/or in having our condition taken seriously at all. This is, in many people’s eyes , the very worst aspect of CFS. And if one is finally sucessful, the the prospect of a temporary return to near-health (until pushed into over-extending oneself) can be really scary!

I’d like to think there’a a way round this. There probably isn’t! but I do suspect that these issues are biggest barrier to adopting this approach.

We’re all used to things not being easy! chuckle* So I very much doubt that’s the real issue

Thanks, anyway for the instructive tips!

jay :)

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