The Dutch Health Council report to their Parliament in the Hague on CFS, 19 March 2018.
The Report’s conclusions and recommendations:
- Scientific research into ME / CFS is necessary to help patients better.
- In the meantime it is essential that the diagnosis ME / CFS is put into practice, that the symptoms of patients are taken seriously and treated as well as possible.
- Their functional limitations must also be fully recognized when assessing entitlements to income and other provisions.
- The Minister of Health, Welfare and Sport gives ZonMw the assignment for a long-term and substantial research program for ME / CFS.
- The research should mainly focus on substantiating the diagnosis, the development of the disease and the treatment of ME / CFS.
- Those responsible for training and further training of health care providers ensure that in education and training attention is paid to the severe, chronic multisystem disease ME / CFS and to what caregivers can mean for the patients with this disease.
- The Dutch Federation of University Medical Centers (NFU) and health insurers appoint a number of university medical centers that – in collaboration with patient representatives, other hospitals, general practitioners, rehabilitation centers, sleep centers and other health care providers in the region – open an outpatient clinic for ME / CFS. associated care networks and research groups.
- Medical assessors in the context of occupational disability insurance, the Social Support Act, the Long-term Care Act and the Participation Act recognize that ME / CFS is a serious illness that is accompanied by substantial functional limitations and do not consider a patient’s choice not to do CBT or exercise therapy as’ not adequate recovery behavior ‘.
Cort Johnson blogs about the surprising conclusions from a country that has long supported CBT and GET as treatments for CFS:
A Serious Disease
It became clear the Committee was on a mission to convince its readers that chronic fatigue syndrome (ME/CFS) is a “serious chronic disease” which substantially limits functioning. One recommendation was that the government institute health care provider training which “highlight(s) the serious, chronic, multisystem (nature of the) disease ME/CFS.”
Prof David Tuller comments on the draft report: Trial By Error: The Dutch Review; My Trip; Bristol’s Silence
The draft stated flatly that, based on the evidence, “the committee sees no reason” for GET to be used in the Netherlands. As for CBT, the draft noted that “a small majority” of committee members believed it could be helpful for some patients. But those in this group also acknowledged that patients also reported having been harmed by the approach, and they suggested that the treatment should be pursued with care. The other committee members objected to any use of the kind of CBT designed for ME/CFS, in part given the therapy’s reliance on the theory of misguided illness beliefs. In any event, this split decision was hardly a full-throated endorsement of CBT.
ME Action blog post, 23 March 2018: Dutch Health Council Downgrades GET for ME/CFS
The report stated that patients must be free to decide whether or not to undergo Cognitive Behavioural Therapy (CBT) and/or GET, and that choosing to decline these treatments should not invalidate patients’ insurance or disability claims.
“The choice to refrain from CBT or GET should not lead to the judgment that the patient misses his chance of recovery, does not cooperate in his or her recovery or acts culpably,” the report stated.