Frequently advised treatments for
patients with chronic fatigue syndrome (ME/CFS) in The
Netherlands appears to lead to deterioration of their condition
as often, or even more often, than 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 organisations. *
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.