English translation by Arie van Buuren. Email: email@example.com.
(C) Arie van Buuren.
Testimony of Prof. Kenny De Meirleir, Human Physiology, VUB (hearing of 5 March 2001). URL: http://jsp.vlaamsparlement.be/docs/stukken/2000-2001/g740-1-BIJL.pdf
Prof. Kenny De Meirleir: When I started focusing on the Chronic Fatigue Syndrome in 1990, I estimated its incidence at about 13,000 patients or 1.3 per thousand people. This figure has now risen to 4 per thousand, corresponding with 30,000 to 40,000 people. This increase is certainly not only the result of a better registration.
What exactly is the Chronic Fatigue Syndrome? It is a disorder whose main symptom is fatigue. In addition, we notice that the patients insufficiently recover from fatigue after minimal exertion and that they lose at least half of their physical and intellectual capacities. In addition, there are a number of organic and psychiatric symptoms. In 1988 and 1994, definitions appeared in reputable American journals, both subsidized by the Centers for Disease Control in Atlanta.
In addition to the symptoms mentioned previously, the following are also mentioned: severely disturbed concentration, painful or swollen lymph nodes, painful muscles, throat and joints, and headache. We also notice that sleep provides insufficient recovery and that patients often need a week of complete bed rest after a brief and intensive exertion. A disproportionate situation.
Mr Komaroff of the Harvard Medical School suggested in 1992 that there are five factors which disturb the immune system and precipitate reactivation of dormant viruses. Toxins, allergies, stress, lymphotropic viruses and chronic disorders of a psychiatric nature activate the immune system so that specific symptoms appear. Komaroff’s model was the first one, but it does not explain why the situation does not revert to normal in time.
During an attempt to describe what exactly is going on in the patients, we discovered a subgroup. We discovered in about ten families with at least two patients that someone had been exposed to pentachlorophenol (PCP). Fifteen to twenty years later, all these people suffered from the Chronic Fatigue Syndrome. Following PCP poisoning, we notice changes in the immune system that increase the risk of infection. Therefore, there is a relationship between toxins and the Chronic Fatigue Syndrome.
Several publications have already shown that zinc, cadmium, chromium, lead, mercury and nickel affect the immune system, so that infections are no longer eliminated. In a family who have built their home on a site where arsenic has been dumped in the past, we notice that the immune system is similarly affected. This has already been shown in animal experiments as well.
Then the connection between the Chronic Fatigue Syndrome and opportunistic infections needs to be shown. We examined the incidence of chronic mycoplasma infections in a group of 272 patients and found this to be 68.7 percent. In two control groups the incidence was less than 10 percent.
We find all kinds of infections. In some people, two or even three infections occur and in 17 percent of cases we find multiple infections. There are 7 trigger factors that may lead to the Chronic Fatigue Syndrome, specifically pregnancy, a number of isotropic viruses, long-term stress, excessive physical activity, various infections, transfusions, allergic reactions and heavy metals, phosphates and PCBs. These factors also lead to a deterioration of immune system function. Once a cellular dysfunction has appeared, infections occur that perpetuate a defect in the immune system and make a return to the normal situation impossible.
A number of abnormalities develop which lead to the symptoms of the Chronic Fatigue Syndrome, so that additional infections occur and cancer risk increases. In long-term cases of the Chronic Fatigue Syndrome, the incidence of cancer is five times higher than normal. It is, therefore, possible to indirectly implicate chemicals in cancer, especially in immune system disorders where P53 (the protective factor against cancer) disappears. If one has one or more factors and gets an infection one cannot get rid of, one enters a vicious circle that is very hard to break.
In the 1984 Lake Tahoe epidemic, where 9 percent of the population develops the Chronic Fatigue Syndrome after infections, the incidence of cancer is higher than normal. Certain lymphotropic and brain cancers occur up to a million times more often in the American population. There is a large statistical increase. This means that specific cancers can develop, which in turn will be related to changes in the immune system. Therefore, the Chronic Fatigue Syndrome can be explained. One of its inducing factors can be found in the environment.
Mr Jan Van Duppen: The caspase activity increases, which
leads to an increased apoptosis. How does this work?
Prof. Kenny De Meirleir: Caspases and calpain are induced by cellular stress, which leads to apoptosis. In an intracellular disorder, calcium influx is increased. Calcium will further activate calpain, so that some caspases are inhibited and therefore block apoptosis. One of the cellular proteins that are split by these enzymes is STAT 1, the carrier of the interferon-gamma signal in the immune cells, which leads to the Th1-to-Th2 shift.
Unfortunately, the Chronic Fatigue Syndrome is often called psychosomatic. This is, however, more indicative of medicine’s inability to deal with it. We now understand the nature of the disorder. In its early phase, apoptosis increases. In a subsequent evolution, apoptosis is blocked and the interferon signal disappears due to the destruction of the protein which transports the intracellular interferon signal to the nucleus (where apoptosis is initiated). This leads to more and more infections.
This process goes on at all levels (in the central nervous system, the muscle cells, the white blood cells, and so on. Some patients suffering from the Chronic Fatigue Syndrome develop epilepsy. We find that most patients have a light form of epilepsy.
This leads to sleep disturbances and a situation where the fatigue increases since one does not recover anymore.
Mr Felix Strackx: To what extent does muscle weakness
depend on the inability to absorb magnesium?
Prof. Kenny De Meirleir: The magnesium influx is replaced with calcium. A relationship exists between extracellular calcium and muscle pain. The muscle pain and weakness increase when the amount of calcium increases. Magnesium is an important intracellular ion which is lost due to channelopathy. It is replaced with calcium in order to restore the ion balance. The problem lies in the channelopathy. There is a direct relationship between channelopathy and muscle weakness. The more pronounced a relationship is present, the more muscle weakness occurs.
Mr Felix Strackx: What is the prognosis for such people?
Prof. Kenny De Meirleir: The prognosis is good if the immune abnormality is reversible and if the infections are treatable. If the immune system has been affected by a substance in the bone marrow, inducing poor immunity, the prognosis is extremely poor. With aggressive treatment, a 50-percent recovery is seen after one year. 100 percent will never be attainable as a number of factors are irreversible. This depends on whether or not the initiating factors are reversible, which, however, is difficult to ascertain.
Mr Bruno Tobback: How is the relationship between these
Prof. Kenny De Meirleir: We do not know that, this has yet to be studied. However, for instance for a family living on an arsenic dump site, the prognosis is poor because this is difficult to revert.
Ms Marleen Van den Eynde: Do you find an increased incidence
of the Chronic Fatigue Syndrome in extremely polluted areas or does the syndrome occur in a random fashion?
Prof. Kenny De Meirleir: There are endemic cases but also
some 4 or 5 clusters with an increased incidence in Belgium, specifically the Olen-Herentals region, an area close to the border with the Netherlands in North Limburg, Peruwelz, 3 to 4 streets in Oostende, and the Sint-Truiden area. This requires a thorough study, since the incidence of leukemia and other cancers also seems to be increased in these areas. It would be interesting to correlate the two.
Mr Jacques Devolder: Has any targeted research been done in
the vicinity of incinerator plants?
Prof. Kenny De Meirleir: No, studies around dioxins are not available for our country or other countries.
Mr Felix Strackx: How long was the period between the contact with heavy metals and the appearance of the symptoms?
Prof. Kenny De Meirleir: We are talking years here, but this also depends on the exposure. In the case of PCP poisoning this is easy: until 1984 or 1986, varnish and certain paints contained PCPs, which were then removed. The acute cases occurred in the preceding period. In chronic cases, PCP poisoning can be present, but in each case the varnish or paint is older than 1985. But that has not been proven.
The only proven cases are those where professor Schepens in Antwerpen has performed measurements on people with an acute illness and where an increase in blood values has been found. The symptomatology of the disease started immediately. In all of these patients we found mycoplasma infections.
Mr Johan Malcorps, Chair: How about further follow-up? On the initiative of Minister Vandenbroucke, medical centers will be established. Should they also engage in the problem mentioned by you: looking for mycoplasmas, possibly antibacterial treatment. Have external factors been taken into account sufficiently?
Prof. Kenny De Meirleir: Within this legal context, only revalidation centers are possible. However, when talking about a disease, symptoms, diagnosis and treatment come first, only to be followed by revalidation. Diagnosis and treatment are not receiving sufficient attention.
Mr Johan Malcorps, Chair: There are two schools of thought: Some primarily propose psychosomatic factors; according to you, external factors do have an important role as well.
Prof. Kenny De Meirleir: Long-term mental stress may also precipitate immunological changes. Revalidation is only possible if a model is available.
Mr Johan Malcorps, Chair: We will, within our competence, try to take the findings of professor De Meirleir into account.
English translation by Arie van Buuren
FLEMISH PARLIAMENT SOCIAL POLICY NOTE – Environment and Health
Hearings and Advice
Article 740 (2000-2001) – #1 – Enclosure
(c) 2001 Vlaams parlement / Flemish Parliament, Belgium