First of all a disclaimer, I suffer from this illness and so this
writeup may lack objectivity. However, in compensation I hope
it's a little more insightful than a cut-and-paste job from a medical
encyclopedia and I offer some practical tips to survive this illness.
Myalgic Encephalomyeltis (or ME)
and Post Viral Fatigue are synonyms for chronic fatigue syndrome.
It is also popularly known as yuppie flu although it is not influenza
and does not only affect yuppies.
The illness is usually characterised as (profound) fatigue unrelieved by
sleep that persists for more than six months (even small amounts of
exercise are very tiring). This assumes that other
illnesses (that can easily be tested for using blood work etc.) have already
been eliminated. cfs is often, but not always, preceded by a viral
At this point it should be clear that cfs is something
of a dustbin diagnosis, i.e. it's what they say you have when they can't
think of anything else. There is no test for cfs. It seems unlikely
that there will be a great deal of progress in understanding this condition
until there is a test.
It seems a reasonable hypothesis (especially considering variation of symptoms)
that not all people diagnosed with cfs actually have the same illness.
Symptoms very between sufferers. Not all patients experience all
symptoms although everyone experiences fatigue. The next most common symptom is muscle and/or joint pain.
This can be very severe. Many people experience problems with
concentration and a feeling of being mentally dazed.
It is quite common to experience a reactive depression. Not surprising
considering what's happened.
Other symptoms include insomnia, nausea, raised temperature,
swollen glands. Severity of symptoms varies widely. Some people are
bed-bound and need full-time nursing care. Other people are able to
continue working but most sufferers will have to give up full time
working during the illness.
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The prognosis is quite varied. Some people recover quite quickly within
a year whereas some people do not ever fully recover. The average recovery
time is 5 years.
There are four main theories as to the cause of cfs. All of them have
some serious problems describing all of the cases, all of them have little
scientific evidence to back them up.
The short version: it's anybody's guess.
Little investigated but there are some striking similarities
to gulf war syndrome and organophosphate poisoning.
As the name suggests this theory posits that the illness is caused
by an initial virus which persists. The weakness in this theory is that
not all cases start with a virus and that there is no evidence that
viruses can persist. The advocates of this theory tend to be most
willing to admit they have no treatment. They suggest taking exercise
as you feel able
and taking increasing amounts of exercise as recovery progresses.
Systemic fungal infection
Here the idea is that the illness is caused by a yeast infection,
sometimes called candida. Such systemic fungal infections certainly
can occur, for example in aids patients. Unfortunately, these
systemic infections do not seem to be visible in cfs patients.
The advocates of this
theory no doubt have explanations for this but by now I'm nervously
looking for the exits. It's science Jim but not as we know it.
The suggested treatment here is dietary (avoid refined carbohydrates
that will feed the infection and also avoid fungals such as mushrooms)
combined with powerful anti-fungal drugs.
This theory tends to be popular with psychiatrists. Advocates
will usually suggest a treatment based on cognitive therapy and/or
antidepressants and graded exercise.
It is important to note that there is no evidence
that this actually works. Further, overexercising can certainly cause
a deterioration in the patient's condition, so this approach can be
dangerous. Noether would like five minutes in a locked room
with a baseball bat with those who favour this theory.
Tips to survive cfs1
In the initial stages of the illness do as little as possible.
Take it easy. Your best hope for a quick recovery is not to
worsen your condition now.
Try to take some exercise but do not overexercise. It is
important to listen to your body. Try to rest before you get
tired not afterwards.
Do around 50% of what you feel able to do each day. This can be very
frustrating but overdoing it is the way to relapse your recovery or
worsen your deterioration.
Do all activities in bursts with rest in between.
Don't do anything for longer than 30 minutes.
Learn some relaxation techniques, like meditation.
Remember that most doctors are totally clueless about cfs
and trust yourself before you trust them.
Alternatively, blindly follow the instructions of your
doctor and hope for the placebo effect.
1. Noether should learn to follow his own advice.