Jos van der Meer, co-founder of the Knowledge chronic fatigue, leaves in Nijmegen. That a virus causes CFS, he does not believe. "Psychological factors are, and underneath is a biological component. But what? "
Text Ellen Fisher Photo Marcel van den Bergh
It does not seem right to belong to the ranks demanding professions, but who himself as a physician or researcher dealing with chronic fatigue syndrome (CFS) can be slow. Blame, hate mail, intimidation, arrest and even a reschtzaaak characterizing recent years the international debate about the condition. "Of course, you will be crucified," says internist Jos van der Meer, resigned.
Van der Meer took last week retired as professor of internal medicine at UMC St Radboud Nijmegen, where he was twenty years ago by clinical psychologist and Gijs Bleijenberg virologist Joe Galama the knowledge set up chronic fatigue. He is one of the world's experts in the field of CFS. When an American virologist two years ago in Science claimed that the syndrome is caused by the virus XMRV ventured Van der Meer, the quality of the research in question. Reactions were furious with him part of patients in the discovery of a physical cause finally saw a confirmation of their misunderstood illness.
But Van der Meer was right, the blood samples were contaminated in the lab. Science withdrew the article. The virologist was fired n she refused to relinquish her lab data for verification. She even landed briefly in jail because they equipment and computer files from the research would have taken. The case against her is still pending.
Aggression against scientists against scientists had already assumed such proportions that some of the trial were stopped, or considered. "A small minority of extremists have hijacked the debate," wrote the British Medical Journal last year. The British newspaper The Guardian was told the police that militant CFS patients as dangerous as animal rights activists.
Van der Meer also considered ever to stop, he admits, looking back. "If I had been alone, I had stopped. But we were with a group of scientists. Moreover, the majority of patients is very positive.
The polder did the trick: he invited the fiercest critics and explained how long he looks for a physical cause of CFS. He sums up: "We looked at the Epstein-Barr Virus; to enteroviruses, to Lyme disease, we have the influence of the immune system studied and of the neurotransmitter serotonin, we having role of the pituitary and adrenal cortex analyzed, we have viewed the effect of drugs, and we have investigated the role of nutritional components. We have, in short, looked from the seam. "
Why is a physical cause is important for patients?
"Apparently they feel that they are taken seriously. I never understood. Why should patients come sure that they have depression but not that it seriously and constantly tired?
If after 35 years of research has found no causes and must we not conclude that it is between the ears?
"Certainly not. We have no hard criterion, we diagnose by listening and to exclude other causes. But chronic fatigue is demonstrable in the brains. At group level, not as creating an individual patient in the scanner captures. Together with professor of cognitive neuroscience Peter Hagoort, we figured out how someone who is tired in the MRI scanner looks like. Patients with CFS appear to use other circuits in the brains. We also discovered that in their central nervous system have less gray matter. Cancer patients who are tired do not. "
How does that fatigue?
He makes a sketch which he invariably shows to patients: a muscle connected to the brain. 'There lactic acid in the muscles through the nerves down there by a stimulus to the brains going. It appears on the display signal tired. As you go to trade. In CFS patients is somewhere in the brain that signal is amplified so that the word tired in chocolate letters appears. We just do not know where that process going and what arrows are wrong.
"Often the symptoms occur after a normal ignition. Patients must already predisposed to have, then they run a virus and then there are factors that make chocolate letters occur. In recent years, still searching for a virus that would preserve those letters, but that story is true, I think not. These psychological factors and underneath is a biological component. But which one? We have numerous studies done to those chocolate letters with medication to reduce and arrows to change. That did not work. "
Patients with CFS were the most difficult group in your office? "My farewell speech was about difficult patients and by that I meant mainly patients with complicated problems. Of these the last few years a lot to me being referred. Of the patients who present at the internal medicine clinic of a hospital with a diagnosis thirds. Of the rest, a large part to a university hospital. The probability that there still something is found, is small. A lot of time and knowledge in that search stopped, but eventually we found only 10 percent of that group a rational explanation for their symptoms'
These 'difficult patients' costs you money?
"Yes, and that is because doctors with a machine gun shoot. They ask to laboratory research, to take pictures. But if doctors fifteen minutes longer with the patient could talk, they would be half of that research is not Applications. Because they know that the chance of success is zero. Whether they like what we call incidentaloma, something meaningless. With the excellent MRI techniques you always discover something. You see a spot in the adrenal and think what is that? And then you do woe additional research, which is often harmful.
"If we're all on would look, we can save money. When we here a few years ago had to economize, we turned out as general internal medicine department in state costs each year by 10 percent. We did less routine examination, we spent more time with the patient. One of our professors has taken the internists patient records by doctors and applicants fall into three categories: low, medium and far. The result was sometimes confrontational. Belonged to which category a doctor, was mainly determined by the hospital where he or she is the first part of the training had followed. Apparently there was a sort of home ingrained culture. "
In the week when you retire went, so did Gijs Bleijenberg farewell, the head of the CVS center. Is the follow-up arranged?
Few internists with an interest in CFS. Chronic fatigue is not a popular topic because a small group of patients we so difficult. For Bleijenberg a successor is found, I stay involved as a researcher. Since I in 1976, as head of the infectious diseases clinic in Leiden, the first seeing patients, I am fascinated by the disease. It will happen but, full of life and are suddenly becoming disabled by extreme exhaustion. Today I read the book the writer Renate Dorrestein, who was attacked by the disease, and you know enough. In the Netherlands we have at least thirty thousand patients. "
Is there any chance that another cause is found?
We have received funding from a benefactor to continue to do brain research. We know that two thirds of adult patients benefit from cognitive behavioral therapy. We see them at the scan that the volume of gray matter in the brains increases. The brain is plastic, so it shows that: brains and minds are one.
"But when a third of CFS patients the therapy was not. Why not? Now I have more time, I hope we find more pieces of the puzzle. Patients with this condition I would love to cure all, even if it means that behavioral therapy is unnecessary. The psychologists in that respect I would like to do without bread. "
