exercise issues in ME/CFS, which I hope can be easily read by doctors
and patients. The pacing program and other statements are adapted
from Dr Lewis's book (Reference 2.) The article has appeared in
Emerge, the major Australian ME/CFS newsletter.
May be reposted
EXERCISE/ACTIVITY GUIDANCE NOTE
FOR Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Compiled by Susanna Agardy
People with ME/CFS react to exercise/activity differently from
healthy people. While healthy people and even those with other
medical conditions find exercise invigorating and strengthening,
people with ME/CFS are unable to sustain activity/exercise for normal
periods and become exceptionally exhausted. Exhaustion may set in
immediately or it may be delayed by as much as one or two days. This
reaction is called payback or post-exertional malaise. It may be
triggered by relatively minor physical exertion such as a walk,
attending a family function, or mental effort and stress which could
have been easily tolerated before the onset of ME/CFS.
Post-exertional malaise is the most exceptional feature of ME/CFS.
Other common symptoms are: fatigue, sore throat, cognitive
dysfunction, sleep disorder, pain, inability to stand for any length
of time (Orthostatic Intolerance), sensitivities to food, drugs and
chemicals, and many others. Exercise may be followed by exhaustion
and additional pain, with tingling and twitching of muscles. Many
other symptoms may also get worse, even symptoms which are not
normally thought of as being the result of exercise (eg. cognitive
dysfunction). Recovery may take days or weeks, depending on the
extent of exertion. For this reason, levels of activity which are
excessive for the particular person cannot be repeated day after day
without risk of serious relapse.
Research has shown that symptoms of ME/CFS are related to impaired
immune, neurological and hormonal responses, infections,
mitochondrial dysfunction, channelopathy, oxidative stress and
more. There are heart, brain, muscle and other body system
irregularities. The aerobic pathways in people with ME/CFS are also
damaged. These make it impossible to maintain and recover from
exercise in normal fashion.
People with ME/CFS are affected to varying degrees, with varying
exercise capacity and with differing symptoms. Some are able to work,
some are capable of moderate activity such as shopping and social
activities, while others are housebound or bedridden. The condition
can fluctuate and people with ME/CFS can improve significantly, some
remain the same for many years, while others become worse.
Recommendations of Graded Exercise Therapy (GET) for ME/CFS are
controversial and are mostly based on the assumption that the illness
is the result of dysfunctional thought processes, abnormal illness
behaviour and physical deconditioning. Studies of GET do not ensure
that the participants included suffer from serious symptoms of ME/CFS
such as post-exertional malaise and mostly use loose, fatigue-based
criteria, allowing mixed groups of fatigued participants to be
included. Although overall improvement of fatigue is usually
reported, there is no evidence in any study that GET improves
post-exertional malaise and other symptoms of ME/CFS. Possible
adverse effects are ignored even when there are high rates of
dropping out and non-compliance. More seriously affected people
would be unable to participate in such studies, yet, the results are
generalised to them. Recommendations for GET ignore the risk of harm
indicated by other research and the frequent worsening of symptoms
following exercise reported by people with ME/CFS.
There are many medical issues to be addressed in ME/CFS and some
treatments may assist although there is no cure. A health
professional who is knowledgeable about the illness should be
consulted. Managing total activity levels is one essential step in
dealing with the illness. This includes self-care, housework,
employment, social activities and mental activity as all activity
makes demands on energy. The level of activity/exercise needs to be
carefully managed at all phases of the illness to avoid
deterioration. It needs to be accepted that many people with ME/CFS
may not regain their pre-illness capacity.
Pacing, or keeping within your boundaries, is designed to ensure that
you do not overdo activity/exercise and at the same time avoid
deconditioning. Pacing, as shown in the steps below, is recommended:
* Establish the total exercise/activity level you are capable of
without any payback or post-exertional malaise. A pedometer or
actimeter may be helpful in measuring the amount of physical activity
you have done on any day.
* To begin with, you need to do less, so that eventually you
increase the chance of doing more.
* Maintain the level of activity/exercise that you can manage
and stay on this plateau until you have a reserve of energy. The
correct level of activity/exercise is that which can be repeated the
next day without any payback.
* Do not move to the next level of activity/exercise until you
have the reserve which enables you to increase your activity level
* Repeat the pattern of staying at the next plateau of
activity/exercise until you are able increase it without payback. You
may reach a limit which should not be exceeded. You may need to stay
at this level of activity.
* Balance physical and mental activity with rest, dividing
activity into short segments, alternated with rest. Rigid schedules
of activity/exercise should be avoided and activity should be
tailored to your level of ability.
* If you have overdone activity/exercise or suffer a relapse for
any reason, decrease your activity/exercise and rest more. Repeatedly
overdoing it may cause a severe and long-lasting relapse, bringing
with it a worsening of many ME/CFS symptoms.
* You need to do the correct type of exercise:
Aerobic exercise can be damaging and should be avoided unless you can
already do this every day without payback. Aerobic exercise includes
running, swimming and cycling - any exercise which causes an
Anaerobic exercise is recommended. This involves exercise such as
lifting and stretching, which can be done more easily without payback.
Listen to your body, do not push beyond your limits and get plenty of rest!
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NICE Guideline on CFS/ME (CG53) Failed to Filfill its
Remit (particularly in relation to the potential dangers of graded
exercise therapy) Margaret Williams 2008 (pp 19-32, effects of
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