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History of CFS/ME

CFS has only recently been recognized as a distinct condition by the medical community. A recent report by the Royal College of physicians officially proclaimed it "real" in the sense that they recognize a cluster of symptoms which is distinguishable from any other disease. They stated that this symptom cluster appeared to have no one cause, with both physical and psychological problems playing a part in the condition.

CFS has officially replaced the term M.E. (Myalgic Encephalomyelitis), because there is no consistent evidence for the swelling of nervous tissue that this name implies. It has also replaced the term Post Viral Fatigue Syndrome, as the symptoms are not always associated with an initial viral infection.

This marks the most recent stage in a long debate within the medical community and society at large concerning the nature of what is now called (in Britain anyway) CFS. Neither the condition or the debate are new.

At the end of the last century, doctors were holding a similar debate over a condition called Neurasthenia. This was characterized by fatigue and muscle weakness, leaving sufferers able to do very little. There was no medical consensus around cause or cure. Some doctors advocated rest, others exercise. Some said it particularly affected successful, active businessmen, professionals, even doctors. Others said it was mainly an illness of females, and was largely "all in the mind".

Anyone familiar with the recent debate around CFS will recognize this situation. The puzzled and divided medics; the distressed sufferer being given conflicting advice; the cartoon stereotypes of an unsympathetic media.

Later into this century, the medical community coined the term "work shyness". This more obviously judgmental label was mainly stuck on the working classes. Again this class difference in diagnoses is persistent today. Community studies have shown that people with the symptoms of CFS occur equally across all classes, however those who actually get a diagnoses of ME or CFS and referral for any kind of treatment, are more likely to be middle class. Many sufferers are aware of having had to fight for their condition to be taken seriously. It would appear that the middle class are better equipped to access and articulate the information necessary for such a fight.

There appears to have been a relative period of quiet over this disorder mid century. It comes to media prominence again in the eighties, under two names - ME and Yuppie Flu. The latter was the name coined by a habitually unsympathetic media which had decided that sufferers were high flyers who could no longer keep up the fast, eighties, Thatcherite pace, who had burned out under pressure.

Again the medical community were split. There were those who believed it was a physical condition, those who believed it was psychological. This is such a traditional divide - the mind from the body - that, until recently, few have questioned it. As we shall see later, this division is not necessarily true or useful.

In the physical camp there have been a variety of theories. Some have believed it to be an immunological deficiency (in parts of America it is labelled CFIDS, Chronic Fatigue and Immune Deficiency Disorder); a muscle tissue disorder; a central and\or peripheral nervous system disorder and, most commonly, a persistent virus.

In the psychological camp the main theory was that CFS was an unacknowledged depression. This had the unfortunate affect of reinforcing that other media fiction - the "all in the mind" illness. This carries the connotation that the condition is less real or even pretended, together with the implication of the very British "pull yourself together" school of treatment.

Not surprisingly most sufferers sided themselves with the physical camp. Throughout the eighties and into the nineties the debate became more and more polarized and less useful. As no one could agree what was going on in CFS, there was no consistent approach to treatment, and an increasing sense of hopelessness around the possibility of change or cure.

However recently things have changed somewhat. The medical community has begun to see that so called physical and psychological factors cannot be readily separated in any condition - be it cancer or depression - and there has been an increased focus on the management of CFS. This has produced research showing that adopting a consistent approach to managing the condition can produce a substantial improvement in the majority of sufferers. The focus has shifted from looking for a single cause and a "magic bullet" cure, to looking at how a variety of factors can cause, maintain and change the condition. Most importantly, there is now a climate of hope around CFS, which was unthinkable just a few years ago.

Author: Vincent Deary

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