All about Guillain-Barré syndrome: Research into post-Guillain Barré fatigue

"GBS is a disorder whose excellent prognosis is invariably emphasized. It is widely accepted that-Guillain-Barre-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. LS.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 reported 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 fact 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.

Patients who are interested in participating in a study of residual fatigue after apparent recovery from GBS are invited to contact Dr Gareth Parry at the University of Minnesota.

He maybe contacted by e-mail at parry001@umn.edu or by post at:
Dr Gareth Parry,
Professor of Neurology,
University of Minnesota,
MMC 295,
420 Delaware St, S.E.
Minneapolis 55455,
USA

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