The Nature of ME

Medical
matters

I contracted ME in the wake of a bout of infectious mononucleosis (glandular fever) in 1965, but for 23 years I did not know that I was not the only person in the history of the world ever to have this condition. In 1988 I discovered that there were other people with it and I learned a name for it – Myalgic Encephalomyelitis. It is sometimes called Chronic Fatigue Syndrome, but this is a poor name for it, because it does not describe the illness accurately. The expression ME does at least contain references to some of the symptoms.

At a very early stage in the illness I began to feel that it was physical in origin and came up with three possible explanations:

• The infective agent which had caused the acute illness had managed to get itself ensconced deep in my body and was managing to live in equilibrium with my immune responses.

• An opportunist infective agent had managed to become esconced in my body while I was weakened by the acute illness.

• The acute infection had damaged my body and, even though I had eradicated the infective agent, I had been left with long-term symptoms.

When I began to learn about ME, it appeared that I had pretty well hit the mark with my first theory. Back in the late 80s and early 90s it was thought that three viruses might be involved, Coxsackie B1, Coxsackie B4 and Epstein-Barr. In my case it would have been reasonable to suspect EBV, because this caused infectious mononucleosis.

However, in the last two decades little progress has been made in the search for an organic cause for this disease. There was hope of a breakthrough when someone thought they had found evidence that a retrovirus called XMRV was involved, but this seems to have been a damp squib. Other research into possible physical causes has been largely starved of funds and too much time, effort and money have been wasted on research into possible psychological and psychiatric causes. Many of us who have the illness believe this is wrong-headed, but the British medical establishment appears to be loath to listen to the people who actually have the condition. Some have become so frustrated that death threats have been made to some prominent researchers. While most of us condemn this extremism, we nevertheless deplore the lofty arrogance of the psychiatric lobby.