'Supporting Sufferers and their families'
The exact cause of ME (also known as CFS) has not yet been determined. It is
known that it is often preceded by events that cause physical stress to the body. Some
such precursors are an infection, allergies, emotional stress, physical trauma, and
exhaustion. While the link between physical stress and the onset of ME has not yet been
clearly established, clinical experience with ME patients strongly suggest that such
stress may be a cause or contributing factor.
ME has been known by various names including “yuppie flu.” Such names tend to
trivialise the disease that causes ME. They may even suggest that the disease is not real
or that it is “just an attitude.” It should be realised that ME is very real and
commonly exhibits measurable symptoms. Several studies have found subtle though distinct
immunological abnormalities, and the latest research has found certain levels of chemicals
elevated in ME sufferers, as well enzymes that are not present in either healthy people or
people that are ill with other chronic illnesses. These pointers we hope will one day lead
to a definitive test for ME.
The onset of ME is often sudden but it is sometimes gradual. There are many symptoms
associated with ME. Overall the feeling has been compared to having a severe flu that
never goes away.
Though physical stress may be a contributing factor, removing the stress does not cause a
spontaneous remission. However, if the conditions that are causing stress are allowed to
remain, the conditions may never improve. ME often strikes hard working and highly
motivated individuals. These people may have difficulty in recognising the seriousness of
their illness and accepting that they must slow down.
Family members and friends often encourage people with ME to push themselves to fight the
disease. Although well intentioned, the effects can be devastating. They often respond by
trying too hard which causes more physical stress. When they find that they cannot do the
things that are expected from them, they become more depressed, which causes both physical
and emotional stress, worsening their condition. What they need most from others is a
compassionate understanding that they are truly ill and need emotional support and
extended rest to recover.
While exercise is important in recovery, it must be done with caution. Most people with ME
are able to determine the correct pace themselves. Since only they know how they are
feeling, nobody else can tell when they have exerted themselves too much. At first,
exercise may be limited only to stretching exercises in bed. Even walking to and from the
bathroom may be too much work. Walking around the block may be as exhausting as a healthy
person running in a marathon. While a general improvement over time is encouraging, they
must remain very cautious about over-exertion which may cause a relapse.
Since people with ME may be unable to care for themselves, they may need help with all
aspects of life. Care should be taken to see that they have a very healthy diet. They may
need help with personal hygiene, laundry, house cleaning and shopping. Expect no more that
you would expect from someone with any other disabling illness.
ME can put a great strain on any relationship. No one knows this better than the person
with ME. The important thing to remember is that they will generally improve over time.
Patience, understanding and help during recuperation will be rewarded by a mush less
disabled if no totally cured individual.