The Norwegian Directorate of Health receives letter signed 308 parents

A coalition of parents and other carers to children and adolescents with ME has written a letter to the Norwegian Directorate of Health about the national centre of excellence for CFS/ME.

The centre has a biopsychosocial approach to ME, and the parents give several examples of how this view is subjective and have negative consequences for the patients.

The letter has 308 signatures.

The coalition is called ME-foreldrene (The ME-parents).

They have written a blog post about the letter
Evaluering av nasjonal kompetansetjeneste for CFS/ME
google translation: Evaluation of the national centre of excellence for CFS/ME

Conclusion of letter:
For children/adolescents, the national centre of excellence for CFS/ME does not meet the requirements for national competence services.
The Competence Service's connection to the Rikshospital's CFS/ME team for children/young people should cease. Expertise about ME-sick children/young people should instead be obtained from a device that is committed to communicating updated, research-based, neutral and balanced information about the disease.

You can find ME-foreldrene on twitter and Facebook if you want to follow them/show support.

 

Good for them!

 

The thinly veiled threat that is given for complaints about similar NHS services is that already sparse treatment provision will be reduced further if such clinics are not allowed a continuation on the biopsychosocial bandwagon.