Treatment ME/CFS often detrimental -NIVEL

[Guest guest]

On 25 January 2005 " the Commission CFS " of the

Health Council of The Netherlands presented its CFS

report to the Dutch Minister of Health.

The report was fraudulent; they described ME/CFS as

a psychiatric disorder, which could be cured by

Cognitive Behavioural Therapy (CBT) and Graded

Exercise Therapy (GET).

In their long reference list they omitted all the 4-5

thousand bio-medical research papers.

````

Some quotes from members of the " Commission CFS "

of the Medical Research Council of the Netherlands:

Dr. E Borst-Eilers - President:

" ....ME patients can be cured with 'graded

exercise.... "

Prof. Dr. Jos van der Meer - member:

" ....I contradict the existence of a physical cause

of Chronic Fatigue (Syndrome).... "

Prof. Dr. Gijs Bleijenberg - member:

" ....Patients suffering from CFS often feel they do

not have any control over their symptoms and......

that there must be something physically wrong

with them.... "

Prof. Dr JJ Heijnen - member:

" ....I see no difference between ME/CFS and

Burnout..... "

~jvr

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Recommended treatment of

ME/CFS often detrimental

Frequently advised treatments for patients with

chronic fatigue syndrome (ME/CFS) in The

Netherlands appear to lead to deterioration of

their condition as often, or even more often, as to

improvement.

This applies to cognitive behavioural therapy

(CBT) and exercise therapy.

Other treatments have far more positive results.

These are the findings of a study by NIVEL

(Netherlands Institute for Health Research)

among the ranks of the ME/CFS patient

organizations. *

Most patients are dissatisfied with the way

doctors diagnose CFS. They find their doctors

have insufficient specific knowledge and feel they

are not taken seriously enough.

The three Dutch ME/CFS patient organizations

hold the view that the care for ME/CFS patients

must be improved considerably. They emphasize

that the development of the multidisciplinary

guideline should continue without further delay.

Medical guideline

Since the beginning of 2007, CBO and the Trimbos

Institute are working on a medical guideline for the

diagnosis, treatment, examination and management

of ME/CFS.

The patient organizations are looking forward to the

completion of this guideline and believe that its

drafting should thoroughly take into account the

findings of the NIVEL study.

According to these organizations, the guideline

should not serve to one-sidedly promote CBT and

physical training; furthermore, the guideline should

not be based upon one specific clinical picture. In

addition to CBT and exercise therapy,

anti-depressants often appear to make patients'

symptoms worse.

According to the survey, better outcomes are

achieved with diets, guidance to find a balance

between activity and rest, guided bedrest, and

painkillers. The patient organizations plead for

doctors to actively help patients to find the best

possible treatment.

Serious consequences

The study further reveals that the consequences of

ME/CFS can be very serious. Many patients are

restricted regarding to work, school and household

activities, raising children, social contacts and

recreation. They indicate that they need more

support - in such areas as income, work, school and

daily life - than they actually receive.

Almost half of all patients disagree with the outcome

of medical examinations, related to various social

benefits, applications for transportation provisions

and home adjustments. A large percentage finds that

factors as prolonged recovery time, varying physical

tolerance, concentration and memory problems, pain

and dizziness, have not sufficiently been recognized.

* A.J.E. de Veer and A.L. Francke,

Zorg voor ME/CVS-patiënten. Ervaringen van de

achterban van patiëntenorganisaties met de

gezondheidszorg. (Care for ME/CFS patients.

Experiences of the supporters of patient

organizations with health care.) NIVEL, Utrecht

2008. The research report (in Dutch) can be

downloaded at

http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf.

The three ME/CFS patient organizations in

The Netherlands:

ME/CVS Stichting Nederland

Noordse Bosje 16

1211 BG Hilversum

me-cvs-stichting@...

www.me-cvs-stichting.nl

Steungroep ME en Arbeidsongeschiktheid

Bankastraat 42C

9715 CD Groningen

info@...

www.steungroep.nl

ME/CVS Vereniging

Kortenhorststraat 23

8015 BW Zwolle

bestuur@...

www.me-cvsvereniging.nl

END OF PRESS RELEASE