Belgian medical journalist Marc Van Impe reports on the continued misrepresentation of chronic fatigue syndrome as a psychosomatic condition, despite ample evidence of multiple physiological abnormalities, and the persecution of physicians genuinely trying to help patients with biomedical treatments based on years of scientific research.
No imaginary illness
The perception of CFS is disastrous for patients
Few diseases create as much controversy as CFS. Care providers, legislators and journalists tend to react with irritation when this disease is discussed. The reasons are lack of knowledge, and a deliberately created false image.
According to Professor Daniel Blockmans, the two doctors who offer their CFS patients a biomedical approach are 'quacks'. The scientific world agrees that CFS is a psychosomatic disease, according to the Louvain professor.
However, there is abundant scientific literature to contradict this view.
In this month's Rheumatology, Prof. Roald Omdal, from Norwegian Stavanger University Hospital, publishes the latest findings on the biological mechanism of chronic fatigue. He adheres to a clear distinction between depression and chronic fatigue. CFS is different, Omdal writes, because it is a chronic inflammatory disease. Omdal radically refutes the thesis that CFS is a psychosomatic disorder.
In last week's edition of The New Scientist, Prof. Thomas Borody of the University of New South Wales, linked CFS to chronic dysfunction of the intestinal flora, leaky gut and chronic inflammation of the brain.
In June last year, virologist Johan Weyenbergh, from the Leuven Rega Institute, described in 'AIDS' how the newly discovered XMRV virus may be the key to developing a treatment for CFS. This summer, an international symposium will be organized on this subject.
On January 8, 2008 the Israel Medical Association Journal published an article, written by professors from the Universities of Padua and Tel Aviv, which reveals the pathogenesis of CFS. Malfunction of specific cell receptors is involved. They described treatment with gammaglobulins.
In 2007 Jonathan Kerr described seven systematic genetic abnormalities in CFS patients in the Journal of Clinical Pathology.
So, is CFS supposed to be an imaginary disease?
Two doctors, Francis Coucke, an internist, and Anne Marie Uyttersprot, a neuropsychiatrist, have been severely disciplined for offering their patients biomedical treatment. First they were threatened. Subsequently, upon initiative by health insurer CM, a complaint was lodged against both doctors by the 'Association of Physicians' (the Belgian Medical Board) of Antwerp and Flemish Brabant. The complaint was rejected twice. Next, the 'Intermutualist Committee' (a Committee reuniting the various Health Insurance Funds in Belgium) brought a complaint before the Administrative Court/ Department for Medical Evaluation and Control. The two doctors stood accused of prescribing gammaglobulines and parenteral nutrition without justification. In a ruling by the court of first instance, the two doctors were sentenced to a huge fine of 635,000 euros. This was followed by a new complaint before the Medical Assocation of East Flanders, who suspended doctor Coucke for two years.
Over the past fifteen years, quite a few misconceptions have deliberately been spread throughout the world . The source of these misrepresentations can be precisely located: it is the school of psychiatrist Simon Wessely, of King's College in London. This man is not only a psychiatrist but also an adviser to the world's largest insurance holding company, editor of the magazine for Evidence Based Medicine, and the English edition of the ICD 10. Wessely decided, by his own accord, to change the classification of CFS from a neuro-immunological disease to a psychiatric disorder. On February 11th 2004, the British Minister for National Health admitted the deception. On several occasions, the WHO had pointed out this anomaly and demanded a correction. Doctor Simon Wessely had been identified as the perpetrator of this scientific fraud. His "impressive research" and his impressive CV appeared to be "built on sand". The British Government responded by making the CFS records of the NIH inaccessible for the next 70 years. A most extraordinary measure.
Finally, on June 9th 2005, the European Commission declared that with respect to CFS, priority should be given to research on the indicators of this neurodegeneration, neuro-development and non-psychiatric brain disease.
Yet, in its latest statistics, RIZIV (Belgium's Institute for National Health) still counted CFS among mental disorders.
This attitude by the government seriously affects patients:
- private insurers are happy to use the psychological label as an excuse to avoid paying compensation,
- hospitals confine CFS patients to the psychiatric ward or reject them altogether
- and the RIZIV's advisory doctors ban CFS patients from receiving benefits, arguing that they are 'making up' their disability.
- doctors working for health insurance companies threaten CFS patients with suspension if they seek advice from the suspended physicians,
- while charlatans, who exploit the distress of these patients, can continue to do their worst.
- in our country, everyone who dares to think 'out of the box' is first threatened, then severely punished and finally ridiculed.
The patients' organisations are asking for an immediate end to this kind of malpractice .
The CFS treatment centers, led by professors van Houdenhove and Blockmans, where only psychotherapy and physiotherapy are given, have been unsuccessful, as confirmed by two official reports. Moreover, many other diseases remain undetected and are therefore not treated.
On several occasions patients, as well as the two doctors who stood under accusation, have asked the RIZIV, i.e. the National Health service, to discuss these issues. Proposals were made for real research projects. The only answer they were given is that patients who do not agree are free to seek redress through the Labour Court. This is an extremely cynical attitude, given the poor financial and physical condition most CFS patients find themselves in over time.
Yet on the table before the Director-General of RIZIV is a draft Royal Decree which states, literally, that CFS is maintained by negative cognitions, such as “excessive attention to pain stimuli”, "fear of exercise” and consequently, deconditioning. In this draft, RIZIV seeks to ban biomedical diagnosis and treatment 'by decree'.
This is beyond our comprehension. Unless it's all about money. Treatment by a psychologist doesn’t incur costs for health insurance funds, because such expenses are not reimbursed. Could this be the reason?
About the Author - Marc Van Impe
Who? Medical journalist, cofounder of the CFS-League, and married to Dr. Anne Marie Uyttersprot, who suffers from CFS since 1998. The contents of this letter are endorsed by the patient organisations Meab, CFS Contactgroup and ME association.
What? CFS is not a psychosomatic disorder.
Why? This is proven in many different ways by the latest research.
Translation by M. Siem - published via ESME