Transcript: This is the first of a number of videos of the interview with internationally renowned ME specialist Prof. de Meirleir.
Is ME-CFS a disease?
I am Kenny de Meileir. I live in Belgium. I am a doctor of internal medicine and I have been working with ME/cfs patients since 1989.
Initially everything was focused on the psychological approach. We soon realised, however, that this was not the right course to take. Through international collaboration we started very early with biomedical research that is still running today.
During my career I have already seen about 15,000 ME patients and I am still seeing more.
For the time being ME has been classified by the World Health Organisation (WHO) under G 93.3 as a neurological disease. What we are dealing with all things considered is a post viral fatigue. It was characterised as such for the time being.
Many have tried to place it under F which is psychiatry, but for the moment it is still accepted under g 93.3, so we consider it to be a neurological disorder but with immunological and metabolic components.
In case you want to know something about the condition itself; ME was first defined by Dr. Ramsey in England. He made many clinical observations and wrote a lot about it. He also described the four syndromes.
The disease evolves over time, it is a chronic condition. There are quite a few common complaints that occur in the majority of patients. One of them is fatigue, but one of the most important things he noticed is that after the least physical effect, recovery takes a very long time. This probably the most important symptom, not so much the fatigue. It is the slow recovery period that plays a part.
Besides this, a variety of complaints occur, such as chronic sore throat, muscle pains and all sorts of other phenomena that don’t have a direct link with neurological diseases such as stomach and intestinal complaints. But it is a disease with a range of at least fifty different complaints, of which twenty occur in at least 70% of all patients.
For the time being it remains a syndrome, as the exact cause is still unknown. A lot of research is now going on to find out what is actually wrong when one has this syndrome.
Ques; What is the definition of Chronic Fatigue Syndrome?
The definition of Chronic Fatigue Syndrome is actually infelicitous. It was introduced in 1988 as a result of a meeting of people from the Center of Disease Control (CDC in America) and was published afterwards in a magazine.
A first definition of CFS emerged. The people who were present then today also agree that the use of the term fatigue in the title was an unfortunate choice. Therefore nowadays we prefer the term ME that is Myalgic Encepholamyalitus. It is something we should look into more deeply, as now the term CFS is in common usage. 1988 is a long time ago and that makes it very difficult to switch back to what Ramsay called ME, earlier in the 1950s. But we are also working full power to evolve into that direction, because many other diseases also involve fatigue. For example over 93% of cancer patients also suffer from fatigue. So that is not at all specific for ME and it is no good to keep the term in the name. A majority of researchers and clinicians have chosen to bring ME back to the foreground instead of using the term CFS. A number of people don’t recognise the condition.
They not only do not recognise it, but they also don’t acknowledge it. and they actually prefer to look at it as neurasthenia. This is not only determined scientifically, but also related to cultural aspects. When in Japan one says one feels tired, it actually implies a severe negative connotation. It means in fact that one feels depressed. The Japanese prefer not to use the word ‘fatigue’. And in the south of France one should not say “Je suis fatigue.” It means in fact one has made his will and is going to die soon. So there is a cultural aspect to the concept of fatigue. That’s why we want to see it disappear as soon as possible
All kinds of discussions are going on, mainly between psychiatrists, and those who deal with psychological models, and those who actually perceive a biological model for this disease. That discussion is shifting more and more to the biological. Today 75-80% of American doctors acknowledge that this condition has a biological background. The balance is clearly shifting in favour of the biological side, but meanwhile we have lost more than 20 years in this struggle.
Recently a new definition was drafted. The first loose definition was drafted in 2001 and published in 2003. This actually determines clinical criteria. The criteria of 1988 were based just upon research criteria. People wanted to talk about the same thing so they had to create criteria. The Canadian Criteria, which today have become the International Criteria are based on the clinical aspect.
A doctors perception; the patient’s condition; the symptoms present; the possible treatments.
Even though only the symptoms are dealt with, treatment is based on biological abnormalities. This was the first step It was taken in 2001, when a group of Canadians, together with four doctors from other countries drafted a first definition which was clinically oriented. Today 26 international physicians and scientists have worked out the clinical criteria that we call the International Criteria for which there is great support. A large basis, since in making this definition 13 countries are represented.
But again the mills of science and politics grind slowly and it will certainly take a few more years to see it spread all over the world.