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Rehabilitation in ME

Dr Betty Dowsett, Honorary Consultant Microbiologist, and TYMES Medical Advisor, considers whether young people have anything to learn from the polio experience.

The choice of polio for comparison with ME is logical since both conditions have always been closely related in terms of symptoms, geographical, social and seasonal locations, while modern research links the findings of brain imaging, neuroendocrine measurement and advanced virological techniques.

EPIDEMIOLOGY:

In the twenty years prior to polio immunisation, three quarters of the ME epidemics reported occurred during or immediately following polio outbreaks or involved staff caring for polio victims.  Sufferers from the 1948 epidemic of ME in Iceland were later found to be immune to the 1953 polio outbreak, indicating a close relationship between the two agents, possibly due to blocking of common receptor sites in the bowel by persistence of the earlier infection.  In fact, until the early 1960's ME was commonly referred to as atypical or abortive poliomyelitis.

SYMPTOMS:

Even before technical advances, which enabled polio and related viruses to be distinguished in the laboratory, the symptoms of both illnesses, though similar, could be differentiated.  The course of ME was more benign but more chronic, with the patients suffering paresis (temporary paralysis or weakness) rather than the paralytic and potentially fatal symptoms of polio.

RECENT RESEARCH:

The main impact of both illnesses has now been shown to relate to the brain rather than to the muscles.  Changes are found mainly in the brain stem (an area containing nerve cells concerned with automatic functions like blood pressure, breathing, digestive function and cardiac rhythm as well as hormonal control of daily sleep and temperature cycles, moods, reaction to stress and glucose metabolism).  It has an important function in respect of transmission of chemical messengers such as serotonin, dopamine and other neurotransmitters, as well as maintaining wakefulness and attention.  Post-mortem histopathology of polio victims more than fifty years ago identifies damage to neurons in these areas, while sophisticated modern brain scans of ME patients indicate damage including abnormal blood flow and metabolism in the same structures.

POLIO REHABILITATION:

Whereas ME sufferers, unlike polio victims, can expect a long life, albeit with some restriction related to fear of relapse, polio patients in years gone by expected  a short illness with early stabilisation, even of paralysed limbs.  Vigorous rehabilitation, with encouragement to discard callipers, sticks and other aids to mobility was the fashion, while many children endured long years of separation from family and friends in convalescent homes, only to emerge with severely damaged self-esteem and a denial of disability, which made their single aim to get the body working as though it had never been damaged.  The counter-productive effects of this regime began to emerge some 30 years later when nearly two million American survivors from earlier polio epidemics began to suffer new weakness in limbs not previously affected together with severe fatigue, pain and temperature sensitivity, cognitive and other disturbances more characteristic of ME.  This Post-polio syndrome (PPS) was initially greeted with disbelief and dismissed as natural ageing, but is now the subject of serious research into means of rehabilitation.

POST-POLIO REHABILITATION:

Research indicates that nerve cells damaged, but not destroyed in the acute illness, went through a long period of recovery but years of stress and overuse eventually led to destabilisation.  Mental stress and physical over-exertion are found to be the main causes of this deterioration.  91% of patients who adhere to a strict regime of energy control, simplification of work and reduction of stress, have been able to restabilise without any other treatment.  For the remainder, controlled trials of drugs to replace low levels of neurotransmitters or specific hormones, are under way but none of these are effective in patients who have not yet learned satisfactory control of energy output.

ME REHABILITATION:

How well does this compare with the current advice so often handed out to young ME sufferers attending specialist clinics, especially since the 1996 Royal College of Physicians' report (i.e. no home tuition, progressive exercise, cognitive behaviour therapy and antidepressant drugs even in the absence of depression)?  The answer is "not at all!" and young people with ME will have to avoid being put into the same frame of mind as the young sufferers from polio half a century ago.

REHABILITATION FOR ME AND PPS NEEDS TO BE THE SAME!
 

  1. Immediately aim to decrease physical and mental stress.
  2. Provide sufferers with mobility and other aids to independence.
  3. Work to decrease emotional stress.
  4. Discover each individual's daily sleep/waking cycle, what they can do and when they can do it.
  5. Structure an environment in which they can learn to live with their disability in a sustainable way and achieve their own goals.
PS  Do use some of that stored energy for the things you really love to do and remember that education pursued at leisure and when well enough (whether at home or otherwise) is often equal or superior to the average school or college course!

REFERENCES

BRUNO RL, Pathophysiology of a Central Cause of Post-Polio fatigue in:- The Post Polio Syndrome: advances in the pathogenisis and treatment.

BALAKAS M, BARTFIELD H, KURLAND LT Eds: Annals of the New York Academy of Sciences 1995; 753: 257-275.

BRUNO RL, FRICK N, interviewed by Jane Colby in "ME, The New Plague", First and Best in Education Ltd. 1996. Chapter 3, 39-54.

This article was first published in the TYMES Magazine, Issue 23, Winter 1998
 


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