M.E. - A MEMOIR

By Campbell Murdoch
Contact the author via Chris Johnstone by e-mail at christopher.johnstone@ntlworld.com

We heard you were an expert! They come in now from time to time, at a rate which is comfortable. Another young lady came to see me today. I have long since ceased to be “an expert” but I still probably see someone like her every couple of weeks. The recognition is far from difficult, in fact it is now easy to recognise. She became ill about two years ago, shortly after the birth of her second child. For me the script is like the re-run of an old B class movie. After a while she decided to go to “the doctor” who said he didn't know what was wrong but they would run a few tests. The tests were all normal so he supposed they'd better send her to see a physician. All of his tests were normal so no one could rightly say what was going on. So she's soldiered on for a couple of years, bravely trying to hold down a full-time job, bring up two kids, preserve some energy and get some sleep, all of the time feeling guilty that people might think she's faking it all. This is where I came in...

It is now 22 years since I became interested in the people who have the illness known then as myalgic encephalomyelitis or ME but now more palatably presented chronic fatigue syndrome or CFS. It has been a frustrating, disappointing, amusing journey but I am now glad that I do not carry the burden of being the national expert. Funny to me now that such a role should seem desirable but it was certainly for this topic that I became “famous-for a while.”

The Neurotics

I was prepared for this role many years before when I first entered general practice in beautiful downtown Kirkintilloch in 1968. I keep telling people that I had three weeks vocational training for general practice-the time between me arriving and the departure for Canada of the colleague I was replacing. One of the precious issues taught to me in that period by the senior partner was how to deal with “the neurotics.” These were the patients, mainly female, who hunted the doctors, all male, with symptoms which did not add up to a conclusive diagnosis and treatment in five minutes, which was all we were allocated for each appointment. Most of the “neurotics” were allowed ten minutes, I suppose nowadays, you would call them “ heartsink patients.” I never ever bothered to learn the characteristics of somatisation syndrome but the great thing in these days was that there was very little we could do for them in general practice. We didn't have labs or much access to Xrays and ultrasounds, so the most you could do was to offer the forward defensive stroke of contact. It does not take very long for my heart to sink, and so I quickly developed ways of coping with these dear souls. The most important issue was to try to enjoy their company and to creatively visualise the wonderful parts of them. Once they sensed that you did not want to leave, they became much more manageable and wanted to leave themselves. Teaching medical students was a great diagnostic test - the “neurotics” always praised you to the heavens when a third party was present.

The Tapanui Flu

After an interlude in Dundee, where the neurotics all spoke diiferent but behaved the same, I came to Dunedin in 1983 as New Zealand's first Professor of General Practice. At that time the papers, well the paper, the Otago Daily Times, was full of stories about the Tapanui Flu. It was so called because lots of patients in this West Otago town were suffering from a fatiguing illness. Many of these were hardy sheep farmers who had never been ill before and they were looked after by a “hard case” GP called Peter Snow. A favourite question for the new Professor was whether I “believed” in the Tapanui Flu. This was 1983, long before Yuppie Flu and Cognitive Behavioural Therapy and Dunedin was awash with “tired all the time” people. I think I said something to the effect that it seemed like a genuine illness. That remark let loose the floodgate of letters, consultations and was the basis of some quite useful research. The main conclusion I reached was that I had never seen this illness before and that these were certainly not “neurotics” or “heartsinks.” It was not unusual for me to address meetings with hundreds of people present but the main learning ground was with individuals in the consultation. Over the next 8 years I described 412 people in some detail and that became the basis of my clinical acumen in this area.

Time does not Discover Truth

Roll forward twenty years and there is still no revealed truth about ME , CFS or Tapanui Flu apart from what you hear and see within the consultation. There have been many attempts to link the disorder with the latest fashionable medical diagnosis of the time of the research. First it was Polio and then it was EBV, Coxsackie or even a retrovirus. Then it was an immune deficiency or even hypersensitivity and then it was a minor psychiatric disorder or even a Functional Somatic Syndrome. The theories sprung up as fast a people went down with the problem - immunisation, toxic chemicals, candida albicans and wheat were all blamed and put on trial but none was found exclusively guilty. The health food shops and quacks did very well as summed up in the saying “Always take your vitamins in alphabetical order - it may not be necessary but why take the risk!”

All I know about ME/CFS

There are only ever two questions asked by those who suffer from this most hellish disorder and they are

What is wrong with me? and
How do I get rid of it?

The diagnosis is dead easy and at least nowadays I can send people off with that reassurance. The natural history is that, in my experience, about half of the people improve after about two years and I never give up the hope of full recovery until that time. In the interim people have to be supported, encouraged to work, live and exercise as much as is compatible with survival. Many of them are real stars who hold down important jobs in the middle of a nightmare and, the more I have known them, the more I have admired them.

Some of my best friends have ME and they are now generally much more sensible than they were 20 years ago. In the old days they used to want to ask interminable questions in cold church halls, now they take me to a wine bar and listen to my jokes. Quite rightly they have given up on the hope a cure and tend to get on with their lives, which is what I am doing.

The Whingers ye shall always have with you

Other hoolet online articles by Campbell Murdoch can be found at:
hoolet edition 46 - M.E. - A Memoir

hoolet is the magazine of RCGP Scotland. It is supported intellectually, financially and emotionally by RCGP Scotland.

This issue maintained by Robert Hallam.