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Guillain-Barré Syndrome is a disorder whose excellent
prognosis is invariably emphasized. It is widely accepted that Guillain-Barré
Syndrome has an excellent prognosis with 75%-85% of patients making a complete
recovery. However, many of my patients have complained to me of persistent
symptoms that continue for years after the initial paralytic event and that
significantly detract from the quality of life. The most prominent of these
symptoms is fatigue. I have made no systematic study of the
proportion of patients with residual fatigue but it is certainly more than
the 15%-25% that the figures in the literature suggest. Most studies of
the ultimate outcome in GBS are based on telephone interviews or retrospective
chart reviews and seemingly minor complaints may have been missed or disregarded.
For example, patients are often asked if they have returned to their previous
work or other previous activities but they may not have been asked whether
they have more difficulty performing their former activities. Very few studies
have focused on residual effects. In one small study from Australia, Dr.
J. McLeod and his colleagues (J. Neurol Sci 1976; 27:438- 443) examined
18 recovered GBS patients and found that half of them had objective residual
neurological abnormalities. Even then these residual abnormalities were
considered to be significant in only four patients. Fatigue in this group
of patients was not mentioned. In another study Burrows and Cuetter (1990)
reported on four patients who had made an apparently complete recovery in
terms of muscle strength and yet had longstanding residual loss of stamina.
They were all armed forces personnel who had been assessed using the Army
Physical Fitness Test (APFT), a quantitative measure of neuromuscular endurance,
prior to their illness. Each suffered from GBS of moderate severity and
each was judged to have made a full recovery in terms of muscle strength
assessed during neurological examination. However, the APFT had not returned
to the former level 1.2-4 years after the acute illness. A recent important
paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999;
53:1648-1654) has established that residual effects from GBS are much more
common than has been generally reposed and that seemingly minor neurologic
abnormalities may still result in annoying disabilities. The study used
a validated index of fatigue severity to assess residual disability. It
included 83 patients who had suffered from GBS an average of five years
previously. About 80% of these patients experienced fatigue that was considered
severe enough to interfere with their life despite the fad that the majority
had normal strength or only minor weakness. They noted also that the fatigue
did not seem to improve over time; the fatigue index score was the same
in patients in whom many years had elapsed as it was in patients whose acute
illness had occurred only 6-12 months previously. This paper provides sound
scientific support for the validity of the observations of my patients who
regularly complain of fatigue even when they have returned to all or most
of their former activities and who are working full time at their former
jobs. Although their strength maybe normal when they are examined in the
doctor's office they are clearly unable to sustain the same level of physical
activity that they had performed prior to their GBS.
Although it is my impression that residual fatigue is much more common than has been generally appreciated I am surprised by the numbers reported by the researchers from the Netherlands. I, therefore, feel that it is important to try to reproduce these results and I am currently planning a study of residual fatigue in GBS patients. I will use the same fatigue index that was used by the Dutch group as well as other measures of overall quality of life. More research is also needed to discover an effective treatment for this residual fatigue. A number of physical and pharmacological strategies have been shown to be effective in patients with multiple sclerosis, another neurological disorder in which fatigue is a major cause of disability. We need to take a leaf from their book and try some of these same strategies in GBS patients with residual fatigue.