Ok, here is a rough translation of this article:
http://www.psy.nl/fileadmin/files/ps...ker_worden.pdf
There were some tough sentences to translate, so there will be some inconsistencies. I think I got the spirit of the article right.
Psychologists wake up!
Chronic fatigue syndrom (ME/CFS) might be an infectious disease caused by a retrovirus (XMRV). Psychologists who treat ME/CFS patients with cognitive therapy should prepare for a new reality.
Until a few years ago only two families of retroviruses that can infect humans were known. The most well-known are hiv-viruses, which cause AIDS. Xenotropic Murine Leukemia Virus - so-called XMRV - has joined these families in 2006. The virus was found a year ago in patients with ME/CFS. This syndrome causes all kinds of symptoms, like chronic fatigue, malaise after exertion, pain, neurological complaints and sleeping disorders. Since the discovery of the retrovirus there's a lot of excitement in patients and the scientific world. Dutch psychologists don't seem to react to these events. The first XMRV congress in the Netherlands will take place on the 30th of october, but psychologists are absent.
Yet against the background of recent developments it becomes more and more curious that the first treatment of choice with ME/CFS is cognitive therapy, in combination with graded excercise therapy (or get). These two therapies are the primary treatment option for ME/CFS, especially in the UK, Belgium and the Netherlands. In these countries the "psychological school" is the top party, while doctors who apply medical treatment are often targets of disciplinary action. Psychologists have had the wind in their sails because of political reasons also. It's more advantageous to tell sick people that they need to behave different than to treat them medically and give them social benefits.
Increasingly under fire
The foundation of this psychotherapeutical treatment was made in the nineties. One of the initiators was the internist Jos van der Meer of the UMC St. Radboud hospital in Nijmegen. The core of cognitive behaviour therapy is teaching people to think different and then making them behave different. People with ME/CFS are thought to maintain their symptoms because they think that being more active will make their health problems worse. Cognitive behaviour therapy in ME/CFS should therefore not only be used to change a negative thought pattern, but also be combined with graded activities on a tight schedule (get or graded excerice therapy).
This combination of treatments has come increasingly under fire in the past decade. Medical psychologist Ellen Goudsmit asked in 2001 in the magazine GezondheidsNieuws why the participants of CFS research in Nijmegen were only screened for fatigue, while other symptoms were left out of the picture. Were participants the average patient? "How many people have deteriorated because of this therapy?" was another question Goudsmit asked.
Critics hold the impression that the researchers from Nijmegen have only included people with chronic fatigue in their studies, instead of people with chronic fatigue syndrome. Positive research results were presented as if they applied to the syndrome. And yet people who are chronically fatigued do not have the additional symptoms that are so distinct for ME/CFS. Like malaise after extertion, pain, neurological complaints and sleeping disorders.
And still this research resulted in cognitive behaviour therapy becoming the national standard for treating ME/CFS. Even worse: the "success" was also used to block ME/CFS patients in getting social benefits ("you don't have to be sick, you can get well with cognitive behaviour therapy"). Accomodations like a wheelchair or stair elevator were also denied, because granting these accomodations would only strengthen the patients believe in their sickness.
A survey in 2008 by Nivel concluded that many ME/CFS patients feel that their condition worsened because of cgt and/or get. Last year Belgian neuropschygologist Michael Maes warned against the risks involved with these therapies. According to him it's potentially harmful for many ME/CFS patients, because their condition can worsen by physical activities. Maes bases this on experiences from his own practice and literature research.
In may of this year he was echoed by the British, after the largest study ever done in ME/CFS patients. Of 906 British ME/CFS patients who underwent graded excercise therapy, 57% said their condition worsened. Cognitive behaviour therapy had no effect in more than half of these patients. Both with get and cgt about 3% of patients said to have had a lot of benefit.
Michael Maes is one of a few doctors in the low countries (Netherlands, Belgium and Luxembourg) who dares to put their finger on the sore spot. And that isn't so strange. Doctors don't really get to know ME/CFS patients anymore. This is a logical effect of the claimed success of cognitive behaviour and graded excerice therapy: a person that remains sick because of wrong thoughts, should change those thoughts and shouldn't be visiting a doctor. As a result doctors are facing a knowledge gap. Doctors that do enter the minefield, like Maes and Kenny De Meirleir of the Vrije Universiteit Brussels (Free University Brussels), are being counteracted by the medical establishment and risk disciplinary action.
More antivirals
And still De Meirleir is a frequently asked speaker. Because of the simple reason he is a ME/CFS expert with a lot of knowledge of the retrovirus XMRV. The disease might be fought with antivirals. According to De Meirleir psychologists should prepare for radical changes.
A study done by TNO in 2003 concluded that ME/CFS patients see a psychologist more often than an internist. This looks like an untenable situation. In the future we will know which part of Dutch ME/CFS patients is XMRV positive. Who is infected with a retrovirus has good reasons to say goodbye to the psychologists.
Toine de Graaf is a journalist and speaker at the Voeding & Psyche congress on 30 october in Utrecht.
