Een internationale ontwikkeling die van belang is voor de positie van ME/CVS-patiënten is de discussie over herziening van het internationaal gezaghebbende handboek voor psychiatrische diagnoses DSM (Diagnostic and Statistical Manual of Mental Disorders). Er ligt een voorstel om een nieuwe groep psychiatrische aandoeningen te creëren. De internationale organisatie van ME/CVS-wetenschappers, de IACFS/ME, heeft gewaarschuwd dat ME/CVS hierin ondergebracht zou kunnen worden. Zij heeft ook iedereen opgeroepen op dit voorstel te reageren. De Steungroep heeft aan deze oproep gehoor gegeven en een brief geschreven aan de American Psychiatric Association met een dringend en beargumenteerd verzoek om deze wijziging niet over te nemen.

De brief van 20 april 2010:

Dear Sirs, 

We represent a Dutch organization, whose aim it is to aid ME/CFS-patients with, among other things, obtaining social security if they are incapacitated and cannot work. 

The IACFS/ME alerted us that the DSM-5 Task Force of the American Psychiatric Association is asking for public comment to their proposed DSM-5 manual of psychiatric diagnoses scheduled for release in 2013.  We are very concerned about the possibility of ME/CFS being classified  as a psychiatric disorder, based on comments made in the Work Group on somatoform disorders. We therefore looked into the scientific evidence for physical impairments in ME/CFS-patients. It turns out that the number of research papers reporting statistically significant physical impairments in patient populations runs into thousands. Those papers concern valid research, meeting approved scientific criteria. They include papers on genetic differences (Light et al, 2009; Kerr et al 2007), viral infections (Lombardi et al 2009; Chia et al, 2007), mitochondrial dysfunction (Myhill et al, 2009), reduced volume of grey matter (Okada et al, 2004; De Lange et al, 2005), diminished cardiopulmonary capacity (VanNess et al, 2007) and immune gene activity that resembles chronic inflammation (Fuite et al, 2008). On the other hand, a study looking into CFS and DSM-IV personality disorders (Courjaret et al, 2009), however, found no difference between patients and healthy controls. So the evidence that ME/CFS is a real physical disease is overwhelming.  

Furthermore, we are convinced that a reclassification of ME/CFS as a psychiatric or behaviourial disease will have dramatic consequences for these patients. Not only could inappropiate therapies be imposed, those could even aggravate symptoms. We have seen this already in several patient surveys regarding the effects of cognitive behavioural therapy and graded exercise therapy. Even though Dutch law stipulates that such aid should be given, a consequence of such a reclassification would be that social secury will be denied patients even more often. As a result these patients and their families will be financially ruined, relationships will be undermined and social isolation intensified.

In conclusion, a reclassification of ME/CFS as a psychiatric disorder would not only disregard the scientific evidence of ME/CFS as a clear distinct physical disease but also undermine patients’ acknowledgement as such, minimize the seriousness of this disease and frustrate the aid they so badly need.

We therefore ask you to look into this matter carefully and sincerely hope that such a step will not be taken.

We thank you in advance for your careful consideration. 

Yours sincerely, 

Steungroep ME en Arbeidsongeschiktheid

The Netherlands