Opinion by medical journalist Marc Van Impe, in response to the article "CFS is a dumping ground”
(Belgian newspaper" De Standaard "dated 24/01/2011 - translated from Dutch original)
"CFS is a lie” In an article entitled “The battle over CFS patients”, which appeared in last Monday's edition of De Standaard, prof.Dr. Boudewijn Houdenhove once again repeats his classic mantra: “CFS is stress related, and should therefore be treated with behavioural therapy and appropriate rehabilitation”. His colleague Professor Daniel Blockmans says:” Almost everyone agrees: CFS is a psychosomatic disorder”.
In a draft Royal Decree, which regulates the operation of the 5 university CFS-reference centres in Belgium, the INAMI (Belgian national institute for health and disability insurance) states that CFS/ME is maintained by negative cognitions such as "excessive attention to pain stimuli”, fear of movement and resulting deconditioning.
In this draft Royal Decree, the INAMI proposes to ban biomedical diagnosis and treatment.
In INAMI policy documents, biological abnormalities are systematically refuted.
And yet, a prior assessment of the CFS-reference centres by the KCE (The (Belgian) Healthcare Knowledge Centre, a semi-governmental (federal) institution) showed that after five years of experimenting, the results were nil.
This is beyond our comprehension.
In the explanatory preamble to the RD, the author, prof. Jean-Pierre Baeyens, wrote that these conclusions were reached on the strength of "evidence-based” data from reputable scientific research.
Surprisingly, no mention is made of the study by the American Whittemore Peterson Institute, the National Cancer Institute and the Cleveland Clinic, published on October 8th 2009 in Science Magazine , which showed evidence of a viral infection, caused by a retrovirus, in no less than 65% of CFS / ME patients. In the U.S. these findings have led the CDC to assume control of research into the cause and treatment of CFS / ME, taking it out of the hands of the bio-psychosocial school, and the team that currently does research on HIV has now been put in charge of new CFS/ME research.
British research published on January 6th 2010 (PlosOne) attempted to disprove the US research. But once again, it appeared that the British researchers had decided between themselves which results should be achieved. This is nothing short of scientific fraud.
The lead author, Dr. Wessely, has a reputation for not hesitating to produce heavily biased scientific work. A House of Lords committee already established, at the beginning of this century, that he was being financed by insurance companies.
Van Houdenhove states that the INAMI's expectations of results achieved in the CFS-reference centres were unrealistic. That's an understatement. At the first working meeting of the leaders of the reference centres, CFS patients were already being labeled as “neurotic benefit shoppers”.
Nevertheless, it is widely known that CFS patients would like nothing better than to be reintegrated into society and return to work (part time if need be). Nobody wants to be left without income. Nobody wants to be dependant on others
There are drug treatments which can alleviate the many symptoms of this seriously debilitating condition. Children who receive early biomedical treatment, can actually recover. With the scientific knowledge currently available, it is a crime to deny them a healthy future. Adults can be stabilised when given the proper medication.
There is also a great need for funding, to be invested in biomedical research, in order to further develop beneficial therapies. The INAMI, under pressure from the largest health insurance fund in the country (the CM, who have the most clout in the Inter-mutualist Committee, which reunites all Belgian health insurance funds) refuses to allocate such resources. What's more, doctors who do not tow the INAMI line are under threat of losing their livelihood.
The worst thing is that the many patients who have been branded with a CFS label in the reference centres, can never again have the label removed , although they may in fact be suffering from another serious condition. There are numerous case studies of patients with cardiovascular disorders, cancer, hormonal disorders or severe gastro-intestinal problems. Such patients are denied further treatment.
When it comes to CFS/ME patients, everything is an uphill struggle. It is even hard to stay honest. We as ME-associations, welcomed the setting up of the CFS-reference centres. We were mistaken. But we shall not give up. We want to rid ourselves of the premiss that CFS/ME is a bio-psychosocial disorder. We want physicians to be free to choose, in all due conscience, how they can best treat their patients and we do not want psychotherapy to be mandatorily imposed.
What's more, is it not remarkable that a number of policy makers, including directors of health insurance funds, doctors and professors from various universities, have sent their CFS stricken family members for treatment to the two doctors who are now being prosecuted?
One final point: both professors, Van Houdenhove and Blockmans, are regularly called upon as experts for insurance companies, who have a vested interest in upholding the 'psychosomatic' lie about CFS, because it suits them to have patients barred from all entitlements. When I questioned Van Houdenhove on the subject, he saw this as just one of the perversities of our system.
I couldn’t have put it better myself.
Marc van Impe
The author is a medical journalist, co-founder of the CFS-League, and married to Dr. Anne- Marie Uyttersprot. The content of this letter was endorsed by the patient associations MEAB, CVS Contact Group and the Belgian ME-Association, and was previously sent to INAMI. There has been no response.