A petition has been undertaken online Norway for biomedical research into ME/CFS http://www.opprop.no/opprop.php?id=meopprop&page=1    This is an initiative made by members of the Norwegian online ME-forum http://meforum.diskusjonsforum.no/


What follows is the English translation of the petition by Cathrine Eide Valsø

ME/CFS – The right treatment for the right patient

To: The Ministry of Health and Care Services in Norway

The parliamentary committee of health- and social service and the Network of Competence for ME

Myalgic Encephalomyelithis (ME) has been acknowledged by the World Health Organization (WHO) since 1969 as a nevrological disorder with the code G 93.3. It is estimated that between ten and fifteen thousand (10-15000) Norwegians are suffering from this serious, chronic disease. At world level it might be as many as 28 million patients, and outbreaks of the disease occurs both in epidemic and sporadic form. Health care systems all over the world has for many years denied ME by treating it as a non-existing illness. Because the underlying cause of the disease still is unknown and the symptoms complex, ME is by some in the medical community still regarded as a psychiatric or psychosomatic disease.

From 1956 the illness had the name ME and was treated on basis of the biomedical aspects of the disease, but after an epidemic outbreak in USA mid 1980s, a group of physicians without enough knowledge of the disease gave the illness a new and very trivializing name – Chronic Fatigue Syndrome (CFS). This trivializing name was in the beginning of the 90s used by a group in England, led by the psychiatrist Michal Sharpe, to re-describe the criteria of the illness in a way that also included all types of patients with fatigue lasting more than 6 months, including patients with psychological illness.

The unknown cause of ME and the inclusion of various groups of patients to what now is called ME/CFS is an intolerable situation both for the patients and society in general. A uniform treatment of a heterogeneous group of patient can only lead to very varying results and will in many cases result in mistreatment and making the illness worse for the patients. This situation also hinders focusing on what ME-patients needs most of all: Precise diagnostics and hope of a future biomedical treatment. Lacking an offer of treatment from the health system, many patients are desperately seeking various forms of self-financed, alternative treatment, most often based on recommendations and experiences from other patients.

The health care system in Norway can not stand by and watch this situation continue. Establishing the ME/CFS-center at the Ullevål University Hospital is a step in the right direction, but the fact that the Health Directorate now is thinking about launching new guidelines (NICE) will lead to a situation where many patients with other diagnoses and other needs of treatment will be diagnosed with ME, making the situation worse. If one is willing to improve the situation for these patients, one must look away from criteria that includes heterogeneous groups of patients and not regards enough the specific characteristics of ME. Further, the diagnostic approaches must be improved by using the methods and tools able to define and differentiate the illness of these patients in such a precise way as possible.

The public health system has for many years tried to explain and treat ME/CFS with a psychosomatic approach without success. Publicly funded biomedical research has been hindered based on this model of understanding, and the problem with ME/CFS has only grown. If there is a will to change this, the biomedical research that shows an organic cause of the illness must be taken seriously. The right research communities must be strengthened and criteria of inclusion instead of exclusion must be established for the illness(es). To achieve this, methods of laboratory research and technology must be improved, and also expanding the use of advanced scanning technology. Improved diagnostics will help all those who fall under the diagnosis ME/CFS today. We therefore ask the following:

1) Say NO to the establishment of the NICE guidelines in Norway and cognitive behavior therapy and graded excersise as the only recommended treatment. Organic disease demands biomedical treatment. New and more precise criteria and procedures for diagnosis must be developed based and the so called Canada-criteria, and sorting out the category of ME/CFS.

2) Setting aside sufficient funding for biomedical research for precise diagnostics and possible bio-markers for ME in cooperation with international research communities. History has shown that many diseases often gets the wrong label because there is no understanding of the cause, or that the causes are hard to find. There lies a great economical and societal value in establishing precise biomedical diagnostics for the diseas(es).

3) The patients who are most hardly struck by the illness must be offered in-patient care and competent care in all regions. This will give an incomparable experience in the health system for treatment of and care for the patients.

We hope that all political parties will follow The Norwegian Labour Party in specifying in their program research and medical treatment for ME-patients, so that Norway becomes a country that finally gives a adequate treatment to these patients. This will result in more patients being able to go back to work and higher quality of life for those afflicted by the disease. People with insight and vision is needed to move this cause forward.

Thank you for your attention. Know that your support means a lot!