Understanding Chronic Fatigue Syndrome

Dr Rosamund Vallings

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (known as ME/CFS) is a complex acquired condition. Sufferers experience a range of debilitating symptoms, including fatigue, and problems with pain, gut function, brain function, immune, cardiac and endocrine systems. Dr Rosamund Vallings has been treating and researching ME/CFS for over 25 years. Here she describes what drew her to this work, and where the research is heading.

I qualified in medicine from the London Hospital Medical College in 1961. This was followed by house surgeon appointments in Plymouth, Devon and the London Hospital. I then set off to New Zealand as a Ship’s Doctor with Port Line, spending some time in NZ, before returning again as Ship’s Doctor to England to marry one of the officers. We settled in England for 2 years and during that time I worked in Family Planning developing an interest in Women’s Health. Then it was back to NZ with our first 2 babies.

We settled in NZ, had a third child, and I initially continued to work in Family Planning and built up a small General Practice focusing on female hormone disorders.

I quite incidentally became involved in some research with one of the rheumatologists from Middlemore Hospital, who was interested in ME/CFS. We assessed a number of patients over several weeks, all of whom were suffering from ME/CFS. I had learnt about this illness in London as a student, as at the London Hospital we were close to the Royal Free Hospital, where there had been a serious flu epidemic (affecting many of the nursing and medical staff) leaving many people chronically ill for months. This became known as Royal Free disease – one of the many names coined for this serious condition. So that, plus my foray into research led me to develop a growing interest in ME/CFS.

The patients who had been involved in the study were at a loss to find a sympathetic doctor, and also did not want to lose contact with each other. They soon became regular patients at my surgery, and word got around that I actually knew something about this illness. And so my practice grew. What did I know? I knew that this was a real physical illness and not just “all in the head” or “hysteria” as had been proposed by some psychiatrists following the Royal Free epidemic.

At this time the government provided funding for doctors in general practice to provide educational seminars for patients. With this I was able to set up programmes for my ME/CFS patients on a wide range of relevant topics. These programmes were well received and many patients attended over the following 25 years. Running a wide range of seminars to various age groups and levels of chronicity meant that I had to embark on a lot of study in order to follow the research, and provide interest and variety at all levels. I had never excelled in biochemistry at university, and I suddenly found myself having to be an instant biochemist/immunologist!

Since those early beginnings, I have attended and spoken at a number of overseas ME/CFS conferences and became involved as Medical Advisor to the NZ ME association, which included a spell as their president.  My interest continued to grow as the research into the illness became more established.  I was often invited to talk to GP groups, hospital doctors and government officials, and as a result became passionate about providing accurate information about this much misunderstood illness. I have written a number of articles at all levels for patients and health professionals, and published in medical journals.  In particular I have been involved with international groups in writing an ME/CFS Primer for Physicians and another for Paediatricians.

Over the last 5 years I have also published 3 informative self-help books about the illness, with one focussing on young teens. This illness affects people of all age groups, and teenagers in particular do need understanding and support.

I continue to see patients with ME/CFS from all over NZ, and I am now really excited by the current research which is finally unravelling the complex underlying biochemical, genomic and immunological dysfunction.  Recent Australian research has shown very real and consistent abnormalities in the immune system. The teams at Stanford University and Otago University have revealed many complexities in biochemical pathways. Others, working in the field of gastroenterology, link an abnormal microbiome to brain and immunological changes. Cognition is affected by poor brain blood flow, which is linked to a tendency to low blood pressure and orthostatic intolerance in many patients. A team from Norway is looking at auto-immune drugs, which do show promise.

Meanwhile we continue to manage and support patients with this illness to the best of our knowledge, giving them a chance of possibly making a spontaneous recovery, or at least the ability to live a reasonably normal life within the boundaries of their illness.

There is as yet no test to reliably diagnose this illness and no specific “cure”.  But the research is slowly but surely leading us in these directions, and it is gratifying to now see so many leading international researchers and clinicians involved. Over the years these people have become close friends, and I also look on the many patients I continue to see as my friends and best mentors.

 

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Dr Rosamund Vallings has a medical practice in Auckland, NZ, and specialises in treating with ME/CFS patients. In 2008, Dr Vallings was awarded Membership of the NZ Oder of Merit for services to ME/CFS, and in 2016 was awarded the Nelson Gantz  Outstanding Clinician Award by the International Association for ME/CFS at their biennial conference.