* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com.
The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters. Everyone is encouraged to sign the petition.
The management for the National Advisory Unit on CFS/ME must resign.
Even though the cause of myalgic encephalomyelitis (ME) isn’t yet discovered, the biomedical research clearly shows that ME is a physical disease. However, the management for the National Advisory Unit on chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) still upholds the biopsychosocial model and mixes ME with other conditions. This leads to wrong treatments and inadequate help for ME patients.
The National Advisory Unit’s views are based on research where the patient selection is a mix of different conditions such as burnout, depression or overtraining in athletes. The results of these studies can’t be transferred directly to ME patients. ME patients deteriorate and suffer from the treatments the advisory unit recommends, and their approach is harming the patients.
ME patients are entitled to evidence-based treatments and we demand that the management for the National Advisory Unit on CFS/ME is replaced with a new one that:
– Keeps up-to-date on biomedical research,
– Uses strict diagnostic criteria for ME and distinguishes ME from other conditions,
– Provides correct and up-to-date information to the healthcare system,
– Takes ME patients seriously, and
– Acknowledges that ME is a physical disease
ME patients and their families lack faith in the management for the National Advisory Unit on CFS/ME.
We demand that the management for the National Advisory Unit on CFS/ME resigns.
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A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model