ME (Myalgic Encephalopathy)
What is ME?
ME goes by many names:
Myalgic Encephalopathy
or
Myalgic Encephalomyelitis
or
Chronic Fatigue Syndrome or “CFS”
or
Post-Viral Fatigue Syndrome or “PVFS”
or
Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”
(ME Association 2014).
ME is a condition causing severe, debilitating fatigue,
painful muscles & joints, sleep problems, gastric disturbances, poor memory
& poor concentration (ME Association 2014).
ME is different for everyone and there are reportedly different
types. These are as follows:
Short term and recovering slowly
Up & Down
Static
Gradual worsening
Prevalence of ME:
Currently it is estimated that some 250,000 people in
Britain are affected by ME (ME Association 2014).
Anyone can get ME! The prevalence of ME among adults ranges
from 0.2% to 2.6% (Prins et al 2006). It is more common in women than men.
Onset is usually between the ages of 20 to the mid-40s. However children can
also be affected and this usually occurs between the ages of 13 and 15.
Diagnosis of ME:
There is no actual test for the condition but NICE produced
diagnostic guidelines in 2007. See below:
Is new or had a clear starting point (it has not been a
lifelong problem)
It is persistent and/or recurrent
It is unexplained by other conditions
It substantially reduces the amount of activity someone can
do
It feels worse after physical activity
The person should also have one or more of these symptoms:
Difficulty sleeping, or insomnia
Muscle or joint pain without inflammation
Headaches
Painful lymph nodes that are not enlarged
Sore throat
Poor mental function, such as difficulty thinking
Symptoms getting worse after physical or mental exertion
Feeling unwell or having flu-like symptoms
Dizziness or nausea
Heart palpitations, without heart disease
Causes of ME:
Abnormalities of the immune, central nervous or endocrine
systems &/or a persistent infectious agent (Nijs et al 2011 and 2014).
Other causes are considered to be excessive stress, while
the illness is maintained by the interaction of behaviour, thoughts, emotions
& physiology (Moss-Morris et al 2012).
Issues that perpetuate the condition are the persons
attempts to get back to normal life by performing bursts of activity while on a
good day creating the need to rest up to recover after overdoing it. This is
known as all-or-nothing behaviour and just makes normal life impossible.
Commonly this up and down behaviour makes the person feel
worse and creates the belief that they won’t be able to improve, which in turn
can make the person give up trying to be more functionally active. This then
leads to complete inactivity causing physicological effects such as
cardiovascular & muscular deconditioning, dysregulation of the
hypothalamic-pituitary-adrenal axis and disrupted circadian rhythms. In this
deconditioned state, things will be worse and it will be much easier to produce
symptoms leading to a downward spiral and fear avoidance of all activities
leading to more deconditioning and so the vicious cycle continues.
Treatment:
There is no cure, so treatment is aimed at improving
symptoms, function and quality of life management techniques (NICE 2007).
Pacing:
Pacing is essentially breaking down your daily activities
into smaller more manageable chunks that you can spread out with rests. For
example if you did all you ironing for the week in one 4 hour block why not do
it in smaller chunks over 7 days. Also you should write down and quantify your
activities each day and score your fatigue out of 10 afterwards. You can use
this as a reference point to refer back to and build up from slowly.
Exercise:
Exercise therapy is a promising treatment for chronic
fatigue syndrome (Edmonds et al 2004).
Exercise therapy & cognitive behavioural therapy (CBT)
in addition to symptom-specific treatments, such as activity management &
pacing are the mainstay of ME treatment (BMJ Best Practice 2013).
Carefully graded exercise to gradually desensitise the body
to the symptoms elicited with activity needs to be set at a low initial
exercise level, that gives patients the opportunity to experience exercise,
which does not produce much of an increase in symptoms. Once this is
established and tolerated then the exercise is then built up gradually in a
programme agreed in advance with the patient. On advancement if the patient
experiences an increase in symptoms, then they should drop back to the
pre-existing tolerated level until symptoms are less intense. After a while,
when ready, the advancement can be taken. The exercise can be as simple as sitting
with good posture at first and can start as low as holding it for several
seconds. If this is the amount tolerated then this is the place to start. Try
to do this activity on 5 days of the week and as it becomes easier extend the
time you do it for but still keep the 5 days per week frequency.
However it has been reported in one trial that
health-related quality of life does not improve with exercise (Nunez et al
2011) and it has been argued that rest, pacing and conserving energy are better
treatments according to Twisk & Maes 2009.
Diet:
You should increase your protein intake and also eat plenty
of good fats for slow release energy. In terms of carbohydrates you should opt
for starchy not sugary foods as the sugar will give you short term energy but
you will be left with less than ever immediately after. Try eating little and
often with no big meals and finally stay hydrated, so drink plenty of water and
stay away from caffeine.
Sleep:
Try to have no more than 8 hours a night and don’t sleep in
the day as this won’t actually help. Now if you are already sleeping a lot then
you need to wean this very slowly down till you aren’t sleeping as much.
Psychological approaches:
Cognitive behavioural therapy (CBT) is a talking therapy
that can help you manage your problems by changing the way you think and
behave. Reductions in beliefs about the harmful effects of exercise and
activity have been related to improved outcomes in ME (Deale et al 1997). Cognitive
Behavioural Therapy (CBT) is also effective in reducing the symptoms of ME at
post-treatment compared with usual care (Price et al 2008).
Pharmacotherapy is not an indicated treatment for ME unless
used for secondary conditions such as depression or sleep disruption (BMJ Best
Practice 2013).
Acupuncture:
The jury is out on this:
No firm evidence is obtained to support or refute the use of
acupuncture for ME (Zang et al 2009).
And…
Acupuncture therapy is effective for ME, but still needs
being confirmed by more high-quality studies (Wang et al 2009).
Massage:
Overall beneficial effect of massage therapy was found in only
1 small Randomised control trial (Field et al 1997). Some people I have seen
find it useful for the pains but others find that it tires them more.
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