I'm translating it, it'll be up in a few minutes hopefully, some is lost in google translate. My translation:
Chronic Search
ELLEN DE VISSER ? 05/05/12, 00:00
Jos van der Meer, co-founder of the knowledge-center chronic fatigue, leaves at Nijmegen. He doesnt believe a virus is the cause of cfs. Psychological factors are it, and underneath that a biologic component. But which?
It doesnt look to fit right in the column of tough professions, but who as a doctor or researcher busies himself with chronic fatigue syndrome (cvs) can have difficult times. Blame, hate mail, intimidation, a lawsuit and even an arrest mark the past years of the international debat surrounding the affliction. Offcourse, youre cruisified, says internist Jos van der Meer, tranquilly.
Van der Meer said goodbye as a professor internal medicine at the UMC st Radboud at Nijmegen last week, where he founded the knowledge-center chronic fatigue with clinical psychologist Gijs Bleijenberg and virologist Joep Galama twenty years ago. Hes known as one of the global experts in the area of cfs. When an American virologist claimed the syndrome was cause by the virus XMRV in Sciende two years ago Van der Meer dared to question the quality of the research done. Furious reactions where his part, coming from patients who finally saw confirmation of their misunderstood illness.
But Van der Meers claims where confirmed; the blood samples proofed to be contaminated in the lab. Science withdrew the article. The virologist was fired when she refused to relinquish her lab data for verification. She was even jailed for a short period of time, because she allegedly took materials and computerfiles from the research center. The trial against her is still running.
Agression against scientist had allready took such forms that some stopped researching, or considered doing so. A small minority of extremists hijacked the debate, wrote the British Medical Journal last year. According to British newspaper The Guardian, police considered militant cfs patients as dangerous as animal rights activists.
Looking back, Van der Meer acknowledges he considered stopping also. If it was just me, I wouldve stopped. But we were an entire group of scientists. Moreover, the majority of patients is very positive.
The poldermodel helped: he invited the most fiercest critics and explained how long hes been looking for a physical cause for cfs. He sums: We have looked for the Epstein-Barrvirus; for enterovirusses; Lyme-disease; we have examined the influence of the immune-system and the neurotransmitter serotonin; we have analyzed the role of the pituitary and the adrenal cortex; we have studied the effect of medicin; and we studied the role of foodcomponents. In shirt, we have busted our back looking.
Why is a physical cause is important for patients?
Apparently the feel they are taken more serious then. I have never understood that. Why is it allright for patients to say theyve got a depression, but not allright to say they are seriously and continuously tired?
When after 35 years of research still no cause is found, shouldnt the conclusion be its all between the ears?
Certainly not. We dont have a rocksolid criterium, we give the diagnosis by listening and exclusion of other factors. But chronic fatigue is demonstrable in the brains. At group level that is, not when you put an individual patient in a scanner. Together with professor of cognitive neurosciences Peter Hagoort we have examined how someone whos tired looks in the MRI-scanner. Patients with cfs appear to be using different circuits in the brains. We also discovered they have less grey matter in their central nervsystem. Fatigued cancerpatients show the same.
How does that fatigue appear?
He makes a scetch he invariably shows to patients: a muscle attached to the brain. Lactic acid forms in the muscles which leads the nerves to send a signal to the brain. The display in the brain shows: tired. You act accordingly. With cfs-patients somewhere in the brain that signal is amplified which leads the word tired to appear in enormous letters. The thing we dont know is where this process takes place and which arrows are headed in the wrong direction.
Often the symptoms appear after a normal infection. Patients must already have a predisposition; then they get a viral infection and after that there are factors that make for the enormous letters to appear. In recent years theres been a continuous search for a virus that would preserve those letters, which is a wrong story in my opinion. Its about psychological factors and underneath that theres a biological component. But which? Weve ran numerous researches to bring the enormous letters back in size and change the direction of the arrows. It failed.
Where patients with cfs among the most difficult group in your practice?
My farewell speech was about difficult patients, with that I mostly meant patients with difficult problems. A lot of them where passed on to me in past years. Two thirds of the patients referred to me are diagnosed at the hospital. A big part of the remaining group visits an academic hospital. Chances that something is found there, are small. There is a lot of time and knowledge put in that quest, but eventually we only find a rational explanation for their complaints in 10 percent of that group.
Those difficult patients cost money?
Yes, and thats because of doctors shooting with a machine-gun. They requisite lab research, get pictures taken. But if doctors would talk with patients for fiveteen minutes longer, they wouldnt requisition halve of that research. Because theyd know the chance for result is sero. Or they find what we call incidentaloms, something without meaning. With the excellent MRI-techniques youll always discover something. You see a spot in the adrenald and think: whats that? After that you do more research, which is often harmful.
If all of us would keep an eye on that, we could save a lot of money. When we had to do some budget cuts a couple of years ago, we as the department of internal medicine were able to cut costs with 10 percent. We did less routine-research, we spent more time at patients. One of our professors went through patientfiles together with the internists and divided the doctors into three categories of applicants: few, average and lots. The results where confronting at times. The categorie a doctor was divided into, for the biggest part stemmed from the hospital that doctor followed the lionshare of his education. Apparently some form of homeculture was ingrained.
In the week you retired, Gijs Bleijenberg head of the cfs-centre also said his goodbye. Whos following in your footsteps?
There are few internists with an interest in cfs. Chronic fatigue isnt a popular subject, because of a small group of patients who are making things difficult for us. For Bleijenberg a successor is found, Im staying involved as a researcher. Since 1976, when I was head of the policlinic infectious diseases in Leiden, and I saw the first patients, Ive been fascinated with the disease. Imagine it happening to you, being in the strength of your life and suddenly becoming an invalid due to extreme fatigue. Read the book Heden ik(Present, me) of writer Renate Dorrestein, who was caught by the disease, and you know enough. In the Netherlands we have at least thirty thousand patients.
Is there any chance a cause is found yet?
We received funding from a benefactor to do further brain-research. We know that two-thirds of adult patients benefited from cognitive behavioural therapy. The scans show that with them the volume of grey matter in the brain increases. The brain is plastic, it comes to show: psyche and brains are one.
But with one third of the cfs-patients the therapie doesnt work. Why not?
Now that I have got more time Im hoping to find more pieces of the puzzle. I would very much like to cure everyone with this affliction, even if it means behavioural therapy became absolete. I would like to rob the psychologists of their bread winnings in that sense.
Resume
1947 Born in The Hague
1964-1971 Studied medicine at LeidenStudie geneeskunde in Leiden
1982 Promoted
1988 Professor of internal medicine, Radboud Universiteit
2005-2011 Vice-president KNAW
Jos van der Meer publicised around eighthundred scientific articles and guided over seventy
publiceerde bijna achthonderd wetenschappelijke artikelen en begeleidde als (co)promotor ruim zeventig promotie-onderzoeken. Hij is lid van de Gezondheidsraad.
Jos van der Meer is getrouwd en heeft twee kinderen.
Chronic Search
ELLEN DE VISSER ? 05/05/12, 00:00
Jos van der Meer, co-founder of the knowledge-center chronic fatigue, leaves at Nijmegen. He doesnt believe a virus is the cause of cfs. Psychological factors are it, and underneath that a biologic component. But which?
It doesnt look to fit right in the column of tough professions, but who as a doctor or researcher busies himself with chronic fatigue syndrome (cvs) can have difficult times. Blame, hate mail, intimidation, a lawsuit and even an arrest mark the past years of the international debat surrounding the affliction. Offcourse, youre cruisified, says internist Jos van der Meer, tranquilly.
Van der Meer said goodbye as a professor internal medicine at the UMC st Radboud at Nijmegen last week, where he founded the knowledge-center chronic fatigue with clinical psychologist Gijs Bleijenberg and virologist Joep Galama twenty years ago. Hes known as one of the global experts in the area of cfs. When an American virologist claimed the syndrome was cause by the virus XMRV in Sciende two years ago Van der Meer dared to question the quality of the research done. Furious reactions where his part, coming from patients who finally saw confirmation of their misunderstood illness.
But Van der Meers claims where confirmed; the blood samples proofed to be contaminated in the lab. Science withdrew the article. The virologist was fired when she refused to relinquish her lab data for verification. She was even jailed for a short period of time, because she allegedly took materials and computerfiles from the research center. The trial against her is still running.
Agression against scientist had allready took such forms that some stopped researching, or considered doing so. A small minority of extremists hijacked the debate, wrote the British Medical Journal last year. According to British newspaper The Guardian, police considered militant cfs patients as dangerous as animal rights activists.
Looking back, Van der Meer acknowledges he considered stopping also. If it was just me, I wouldve stopped. But we were an entire group of scientists. Moreover, the majority of patients is very positive.
The poldermodel helped: he invited the most fiercest critics and explained how long hes been looking for a physical cause for cfs. He sums: We have looked for the Epstein-Barrvirus; for enterovirusses; Lyme-disease; we have examined the influence of the immune-system and the neurotransmitter serotonin; we have analyzed the role of the pituitary and the adrenal cortex; we have studied the effect of medicin; and we studied the role of foodcomponents. In shirt, we have busted our back looking.
Why is a physical cause is important for patients?
Apparently the feel they are taken more serious then. I have never understood that. Why is it allright for patients to say theyve got a depression, but not allright to say they are seriously and continuously tired?
When after 35 years of research still no cause is found, shouldnt the conclusion be its all between the ears?
Certainly not. We dont have a rocksolid criterium, we give the diagnosis by listening and exclusion of other factors. But chronic fatigue is demonstrable in the brains. At group level that is, not when you put an individual patient in a scanner. Together with professor of cognitive neurosciences Peter Hagoort we have examined how someone whos tired looks in the MRI-scanner. Patients with cfs appear to be using different circuits in the brains. We also discovered they have less grey matter in their central nervsystem. Fatigued cancerpatients show the same.
How does that fatigue appear?
He makes a scetch he invariably shows to patients: a muscle attached to the brain. Lactic acid forms in the muscles which leads the nerves to send a signal to the brain. The display in the brain shows: tired. You act accordingly. With cfs-patients somewhere in the brain that signal is amplified which leads the word tired to appear in enormous letters. The thing we dont know is where this process takes place and which arrows are headed in the wrong direction.
Often the symptoms appear after a normal infection. Patients must already have a predisposition; then they get a viral infection and after that there are factors that make for the enormous letters to appear. In recent years theres been a continuous search for a virus that would preserve those letters, which is a wrong story in my opinion. Its about psychological factors and underneath that theres a biological component. But which? Weve ran numerous researches to bring the enormous letters back in size and change the direction of the arrows. It failed.
Where patients with cfs among the most difficult group in your practice?
My farewell speech was about difficult patients, with that I mostly meant patients with difficult problems. A lot of them where passed on to me in past years. Two thirds of the patients referred to me are diagnosed at the hospital. A big part of the remaining group visits an academic hospital. Chances that something is found there, are small. There is a lot of time and knowledge put in that quest, but eventually we only find a rational explanation for their complaints in 10 percent of that group.
Those difficult patients cost money?
Yes, and thats because of doctors shooting with a machine-gun. They requisite lab research, get pictures taken. But if doctors would talk with patients for fiveteen minutes longer, they wouldnt requisition halve of that research. Because theyd know the chance for result is sero. Or they find what we call incidentaloms, something without meaning. With the excellent MRI-techniques youll always discover something. You see a spot in the adrenald and think: whats that? After that you do more research, which is often harmful.
If all of us would keep an eye on that, we could save a lot of money. When we had to do some budget cuts a couple of years ago, we as the department of internal medicine were able to cut costs with 10 percent. We did less routine-research, we spent more time at patients. One of our professors went through patientfiles together with the internists and divided the doctors into three categories of applicants: few, average and lots. The results where confronting at times. The categorie a doctor was divided into, for the biggest part stemmed from the hospital that doctor followed the lionshare of his education. Apparently some form of homeculture was ingrained.
In the week you retired, Gijs Bleijenberg head of the cfs-centre also said his goodbye. Whos following in your footsteps?
There are few internists with an interest in cfs. Chronic fatigue isnt a popular subject, because of a small group of patients who are making things difficult for us. For Bleijenberg a successor is found, Im staying involved as a researcher. Since 1976, when I was head of the policlinic infectious diseases in Leiden, and I saw the first patients, Ive been fascinated with the disease. Imagine it happening to you, being in the strength of your life and suddenly becoming an invalid due to extreme fatigue. Read the book Heden ik(Present, me) of writer Renate Dorrestein, who was caught by the disease, and you know enough. In the Netherlands we have at least thirty thousand patients.
Is there any chance a cause is found yet?
We received funding from a benefactor to do further brain-research. We know that two-thirds of adult patients benefited from cognitive behavioural therapy. The scans show that with them the volume of grey matter in the brain increases. The brain is plastic, it comes to show: psyche and brains are one.
But with one third of the cfs-patients the therapie doesnt work. Why not?
Now that I have got more time Im hoping to find more pieces of the puzzle. I would very much like to cure everyone with this affliction, even if it means behavioural therapy became absolete. I would like to rob the psychologists of their bread winnings in that sense.
Resume
1947 Born in The Hague
1964-1971 Studied medicine at LeidenStudie geneeskunde in Leiden
1982 Promoted
1988 Professor of internal medicine, Radboud Universiteit
2005-2011 Vice-president KNAW
Jos van der Meer publicised around eighthundred scientific articles and guided over seventy
publiceerde bijna achthonderd wetenschappelijke artikelen en begeleidde als (co)promotor ruim zeventig promotie-onderzoeken. Hij is lid van de Gezondheidsraad.
Jos van der Meer is getrouwd en heeft twee kinderen.
