‘ME: medical or mystery?’ | Dr Charles Shepherd writes for ‘Public Services Europe’ journal | June 2013

June 29, 2013

Dr Charles Shepherd, medical adviser to The ME Association, has contributed the first page in a two-page feature on this illness in the June edition of the public policy review journal, Public Service Europe. The second page has been contributed by Dr Ingrid B Helland, Leader of the Norwegian National Competence Service for ME/CFS at Oslo University Hospital. The journal can now be read online HERE.

Dr Charles Shepherd, Honorary Medical Adviser at the ME Association, reports on a disease that continues to divide medical opinion…

Back in 1955, London's Royal Free Hospital was forced to close for several months. Nearly 300 members of staff had been taken ill with a mysterious polio-like infection that involved their muscles and nervous system. The following year, the cases were written up in The Lancet, and a new disease – myalgic encephalomyelitis (ME) – entered the medical dictionary.

However, the precise infection was never identified – so many doctors viewed the discovery with growing scepticism. A paper in the British Medical Journal claimed the outbreak was ‘mass hysteria' and I can still recall being taught at medical school that ME was a non-existent illness that doctors could forget about.

After catching chickenpox from one of my patients, I had to change my mind. The chickenpox went away but I was left with all the classic symptoms of ME: exercise-induced muscle fatigue, cognitive dysfunction and feeling as though I had a constant dose of flu. At the time, thanks to continuing scepticism about ME, it was impossible to get a diagnosis or proper advice on management. So instead of pacing my activities, I tried to exercise my way out of ME and ended up feeling worse rather than better.

Fortunately, the situation is now slowly improving. ME is recognised to be a serious and debilitating condition by the Department of Health, Department of Work and Pensions and NICE, and classified as a neurological disease by the World Health Organisation. The Medical Research Council set up an Expert Group who identified a list of biomedical research priorities and went on to provide £1.5m of ring-fenced funding to support this. And there are now NHS services where people can be referred for both diagnosis and management, although these services still operate on a ‘postcode lottery' basis.

Symptoms: What is ME?

Most people pre-date the onset of their ME to an acute viral infection from which they ‘fail to recover'. From then on, they experience a characteristic range of muscle, brain and infective/immunological symptoms. Other key symptoms include pain (in muscles, nerves or joints), unrefreshinbg sleep, and problems with balance and temperature control. More serious neurological symptoms occur in a minority, especially those at the severe end of the spectrum.

Research findings

Research suggets that ME is a three-stage process involving predisposing, precipitating/triggering and perpetuating factors. Firstly, there appears to be a genetic predisposition, making some people more likely to develop ME/CFS when they have an inappropriate immune system response to a precipitating event – commonly a viral infection. ME is then perpetuated/maintained by a mix of abnormalities involving the brain, muscle, endocrine and immune systems (where there appears to be an ongoing immune system activation).


Diagnosis is made on the characteristic system complex and the use of blood of other tests to exclude other conditions that can cause anm ME/CFS-like illness.


The most important aspect is learning how to balance appropriate periods of rest with activity. This has to be done according to stage and severity of the illness – a process known as pacing. Drugs such as Rituximab, aimed at dealing with the underlying disease process, are now being assessed in clinical trials – but they are not yet available for routine use. The main use of drugs is for relief of symptoms such as pain and sleep disturbance.


Epidemiological research suggests an estimated 250,000 people in the UK have ME/CFS. Onset commonly occurs during 20s to 40s in adults, and between 11 and 14 in children, of which there are around 25,000 sufferers, with ME a common cause of long-sterm school absence.

All social classes and ethnic groups are affected, and the annual cost to the economy has been estimated at £3.5bn. Prognosis is variable with 25% of people severely affected – house or bedbound – at some stage in the illness.

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