Dutch doctors using questionable treatment on kids with chronic fatigue syndrome

Doctors in the Netherlands often treat children with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) using a method with questionable scientific basis, NOS reports after studying international medical guidelines, scientific studies, and the positions of medical advisory organizations and patient associations in the Netherlands.

ME/CFS is a chronic disease that leaves patients physically exhausted after minimal effort. It has many similarities with Long Covid. In the Netherlands, doctors still treat children with ME/CFS with cognitive behavioral therapy aimed at training them to ignore warning signals from their body when it has reached its limits.

The approach assumes that ME/CFS does not have a physical cause, but a psychological one - misleading thoughts make the patient believe they are exhausted. Working on fitness while ignoring fatigue is an important part of this treatment. However, it has happened that children physically collapse because they ignored their exhaustion signals, which worsen their symptoms.

Doctors in the United States and the United Kingdom, among others, have therefore shifted their focus years ago, looking at neurological and immunological causes. Over 20 years ago, American doctors and researchers identified post-exertional malaise as a core symptom of ME/CFS. That means that people become ill when pushing their limits, suffering from severe symptoms like migraines and total exhaustion. The U.S. and U.K. removed the cognitive behavioral therapy still used in the Netherlands from their medical guidelines for ME/CFS after extensive evaluations in 2017 and 2021.

But the Dutch Association for Pediatrics still sees cognitive behavioral therapy as proven and effective, calling it an important treatment option in its guideline for ME/CFS.

Patient organizations PostCovidNL and LongCovidNederland told NOS that they can’t believe this treatment is still used on children with ME/CFS. Most Long Covid patients also have post-exertional malaise, and some received behavioral therapy early in the pandemic. "The stories of patients who have experienced this are harrowing," Diewke de Haen, director of PostCovidNL, told the broadcaster. That is why the therapy is not used in the recently established Long Covid expertise centers.

According to NOS, pediatricians are also involved in the Long Covid expertise centers. The Dutch Association for Pediatrics did not answer the broadcaster’s questions on why the treatment is okay for children with ME/CFS, but not for people with the similar Long Covid.