ME/CFS -No imaginary illness

[Guest guest]

No imaginary illness

by Marc Van Impe - Belgian journalist

The perception of CFS is disastrous for

patients

*Over the past fifteen years, quite a few

misconceptions have deliberately been sent around

the world*,

writes MARC VAN IMPE. He both explains and

suggests why this may have happened.

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 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.

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 gammaglobulines.

In 2007 Kerr described seven systematic

genetic abnormalities in CFS patients in the Journal

of Clinical Pathology.

So, is CFS supposed to be an imaginary disease?

635.000 euros

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.

Cynical

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?

MARC VAN IMPE

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.

CFS is not a psychosomatic disorder.

This is proven in many different ways by the latest

research.

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A French version of this article can be found at:

http://hotfile.com/dl/104825972/6bcea62/LE_SFC_est_un_mensonge-Marc_Van_Impe.doc\

..html

A Dutch version at:

http://hotfile.com/dl/104827694/dbda05b/CVS_zou_een_ingebeelde_ziekte_zijn_Marc_\

Van_Impe.doc.html

When not a member, you have to wait for a minute

or so.

~jan van roijen