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MOBILITY PROBLEMS IN ME

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INTRODUCTION

ME (Myalgic encephalomyelitis) is a common chronic neurological disablement which affects between 300 and 500,000 individuals of all ages in the UK, most of them in the most socially and economically active population groups. The symptoms of this multi system disease are characterised by post encephalitic damage to the brain stem (1) (which contains major nerve centres controlling bodily homeostais) and through which many spinal nerve tracts connect with higher centres in the brain. Some individuals have, in addition, damage to skeletal and heart muscle.

SPECIFIC MOBILITY PROBLEMS INCLUDE THE FOLLOWING:

1) NEUROLOGICAL PROBLEMS.

(a) Exhaustion, weakness and collapse following mental or physical exertion beyond the patents’ capacity. This arises from metabolic damage to the reticular activating system and to the hypothalamic control of the pituitary-adrenal axis (2). Whereas in healthy controls or in other illnesses (such as depression) there is an increased metabolic response to exertion, in ME this is diminished, leading to sudden collapse which requires several days or more for recovery. These complications (following even trivial exercise) are not recognised in short medical examinations for social benefits and no allowance is made for the delayed effects of exertion.

(b) Recent research indicates that these patients(3.) have high resting energy requirements which further diminish their resources.

(c) Problems with balance are common in ME due to involvement of spinal nerve tracts in the damaged brain stem.

2) MUSCULO-SKELETAL PROBLEMS

(a) Over 70% of ME patients suffer from significant bone and muscle pain (due to disordered sensory perception – a further consequence of brain stem damage which seriously affects their mobility).

(b) Other patients have (in addition) metabolic damage to muscle fibres resulting in abnormal early lactic acidosis as demonstrated by sub anaerobic exercise tests.

(c) 30% of patients with abnormal exercise tests have evidence of persistent infection in the muscle and of muscle infarcts (tender points on pressure affecting mainly limb and trunk muscles) and of

(d) jitter (due to inco-ordinated muscle fibre action) on slow leg raising for example, following damage to the neuromuscular junction. A rapid decline in thigh muscle tone can be demonstrated between 2 and 24 hours after exercise (3.)

3) CARDIOVASCULAR PROBLEMS

Patients with ME suffer a variety of symptoms arising from autonomic nervous system dysfunction (4.) including liability to a dangerous drop in blood pressure on standing for more than a few minutes, while some 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led, in several cases, to sudden death following exercise.

TO SUMMARISE:

Mobility aids are an essential requirement for patients with ME if they are to stabilise sufficiently to retain economic and physical independence. I can think of nothing more detrimental to the prospect of stabilisation in this illness than to remove any type of mobility support (including disabled parking concession) which can ensure continued activity in the future and spare the enormous potential cost of social and institutional care, associated with deterioration and chronic disablement.

Dr E.G. Dowsett Honorary Consultant Microbiologist Member of the Chief Medical Officer’s Working Party on ME

References:

(1.) SCHWARTZ RB. et al. SPECT imaging of the brain: comparison of findings in patients with Chronic Fatigue Syndrome, A1DS dementia complex and unipolar depression. American Journal of Roentgenology. 1994; 162 : 943-951

(2.) DEMITRACK MA. et al. Evidence for impaired activation of the Hypothalamic-Pituitary-Adrenal axis in patients with Chronic Fatigue Syndrome. Journal of Endocrinology and Metabolism. 1991; 73 : 1224-1234.

(3.) CHAUDHURI A, BEHAN WMH, BEHAN PO. et al. Chronic Fatigue Syndrome. Proceedings of the Royal College of Physicians, Edinburgh. 1998; 28 : 150-163

(4.) STREETEN DHP, BELL DS. Circulating Blood Volume in Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome. 1998; A91) : 3-11

 

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