Benign Myalgic EncephalomyelitisME InternationalMyalgic EncephalomyelitisME International

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Countess of Mar's address in the House of Lords,  Jan 22, 2004

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While victims of the illness are slowly winning the battle for recognition of ME as a genuine illness, there is still disagreement about the best way to treat it. In 1948, a polio-like illness in New York State resulted in the identification of a new virus that was called Coxsackie, after the town on the Hudson River. The disease was called atypical polio because its symptoms identified it as a kind of polio, despite the virus being different. This kind of polio has since been renamed ME and more recently chronic fatigue syndrome. It remains a type of polio, despite the change of name. Technology has shown the generic similarities of the most frequent agent that causes it. These techniques place Coxsackie, the virus most often implicated in ME, into the polio family tree, along with so-called echo viruses. Coxsackie has been further subdivided into types A and B. In total, there are at least 72 enteroviruses. Maybe there are more viruses now, if the research has moved on. Some of the points that I am making are based on research by Jane Colby, who wrote a book called ME—The New Plague.

True ME, as opposed to fatigue symptoms, is clinically polio-like, and has often been diagnosed as non-paralytic polio. Patients have weakness, back pain and they are systemically ill. It has been unfortunate that some of these patients have been labelled as having chronic fatigue, as true ME is a neurological condition that usually originates with a gut virus infection such as Coxsackie, which in some cases can be demonstrated. The requirement to put off diagnosing ME for six months after the patient falls ill has made this difficult. If the tests are not done quickly, it is too late to identify the virus. Research now supports the view that ME is probably a persistent viral infection causing inflammation throughout the central nervous system and disturbance of hypothalamic function.

If ME is a type of polio, why does everyone exposed to the viruses not develop ME, just as they did with polio? In fact, only a small number of those with the polio virus became paralysed. About 90 per cent did not realise that they were suffering from anything more than a cold or flu. With both polio and ME, the state of the immune system governs susceptibility.

By altering the population's resistance to particular organisms, we alter the balance of infectious agents in the environment. Polio has declined through vaccination, but this has left us open to other polio-related viruses. It is therefore not surprising that since the late 1950s the incidence of ME has risen. Many experts have predicted that it will be the neurological disease of the 21st century. By suppressing the spread of a few enteroviruses, we have opened the door to the rest.

Papers investigating the epidemiological aspects of ME/CFS have revealed further convincing parallels between the behaviour of this disease and polio. ME is described as being ushered in by a minor, flu-like illness which is identical to and has all the features of the minor illness of abortive poliomyelitis. In comparisons with epidemic polio, we see similar

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features, including the incidence of the disease decreasing between January and the summer, and peaking between August and October. ME, or atypical polio, is a serious and debilitating multi-system malfunction leading to such profound weakness in some children that they are unable to speak and must be tube-fed—but they can breathe. Enteroviruses have an affinity for certain tissues, and many do not attack the respiratory centre causing its paralysis, as in polio itself.

What are we doing to our teenage ME sufferers when we force them back to school, deny home tuition and tell them to exercise as a form of therapy? What will happen in 30 years to children now getting ME in a climate where they are disbelieved and told to pull themselves together? The condition post-ME, which we are now seeing in adults, may occur many years after infection, like post-polio.

This is far too complex a subject to be debated in one hour. I hope that the Minister will be able to confirm that ME is now classified as a neurological disease. I was delighted to read in the Times a couple of days ago that new centres are being put in place to undertake new research. I hope that he can confirm that they will be for research and treatment. If polio victims had been able to breathe, would we have ever taken that disease seriously?

2.5 p.m.

Lord Walton of Detchant: My Lords, I apologise to the House for the fact that it was not until late yesterday evening that I felt able to contribute briefly to this debate. I am grateful for the opportunity to do so at this stage. I declare an interest as a practising neurologist until 12 years ago. During my career, I saw many patients diagnosed with ME. Also, when I was president of the World Federation of Neurology, I consulted on behalf of that organisation with the World Health Organisation on the revised international classification of diseases, ICD-10.

Medical diagnosis is not an exact science. One of the problems with ME is that attitudes and views about its nature, causation and treatment have continued to change profoundly over the years. As the noble Countess said, diseases that were so diagnosed began to emerge in the 1930s, and then many more occurred in the 1950s. There were a number of notable epidemics in various countries across the world, so that in certain circumstances the condition became known as Icelandic disease. There was the notable epidemic in the Royal Free Hospital in London among the nurses, and subsequently the medical staff, in the 1950s.

I and my colleagues in Newcastle-upon-Tyne studied an outbreak which was believed to be "the Royal Free disease", in a closed community of trainee teachers in a convent in Newcastle-upon-Tyne. We subsequently published an article in the Lancet, "An Epidemic of Benign Myalgic Encephalomyelitis in Newcastle-upon-Tyne": "benign" because patients ultimately recovered, but they were left with considerable fatigue; "myalgic" because many of them

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complained of muscle pain; and "encephalomyelitis" was based on a much less secure foundation. There was no evidence in these cases, despite what the noble Lord, Lord Colwyn, said, of any consistent abnormality in the cerebral spinal fluid. Variable abnormalities were seen in the blood, but no consistent viral aetiology was ever demonstrated in these cases in the way that had been demonstrated in patients suffering from Coxsackie A and Coxsackie B infections to which he referred.

Unlike pre-paralytic, or non-paralytic poliomyelitis, in which there were always abnormalities in the cerebral spinal fluid, abnormal cells and so on, none of these patients showed that kind of condition. Apart from finding certain curious electromyographic abnormalities, meaning abnormalities on electrical examination of the voluntary muscles, no consistent neurological signs were ever clearly demonstrated in these patients. My experience over the years convinced me that there was often an organic component, commonly post-viral, so that the condition later became known as post-viral chronic fatigue syndrome. "Post-viral" was subsequently dropped, so that it is now called chronic fatigue syndrome.

In many cases, there was a profound psychiatric disturbance. Looking back, I am satisfied that much of what I saw in that closed community in Newcastle was based on a chronic hysterical reaction, preliminary to an early viral infection. In the many other patients whom I subsequently saw, I found that a number, as the noble Lord, Lord Turnberg, said, responded effectively to anti-depressant medication. That is not to say that the condition was caused by depression.

I share with the noble Lord my admiration for the work of Simon Wessely, because it is the most solidly based and well-founded research that has been done on this condition. That there is an organic component I am in no doubt, but equally, in many cases, there is a profound overlay of psychiatric manifestations. The greatest hope lies in the kind of treatment to which the noble Lord, Lord Turnberg, refers.

2.10 p.m.

Lord Addington: My Lords, I must admit to feeling as if I have put my head in a noose. We have medical disagreement raging across the Chamber and the use of words that I will not even attempt to understand. One thing is clear: the noble Countess's historical basis for complaint is solid. There is a tremendous tradition, when we do not know the medical or physical causes of something, of bringing in the quacks, to put it bluntly. That has happened on numerous occasions.

I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess's speech, I suspect that there are many libel lawyers who, on hearing our

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debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at. We must face facts. There have undoubtedly been occasions on which mental health problems have been suggested for things that turned out to be physical conditions. That has occurred. The fact that ME has a physical component—an initial physical component, at least—has been agreed by, I think, everybody here. If the noble Lord wants to correct me, he can.

Hansard: Official Record