Our demands to the Minister of Health:
Because the current SIHII guidelines aim for a one-sided, unrealistic and insufficiënt CFS policy it is highly necessary to call for urgent action towards a policy that meets the real needs of the large group of ME/CFS and fibromyalgia patients in Belgium.
Current policies are severely discriminatory towards the majority of patients and have already proven their own ineffectiveness.
We ask specific attention of the Minister of Health to, among others, the following points:
The right to exercise freedom of choice with regard to physician and therapy.
Urgently increased attention for severely ill patients and the organisation of their medical care.
Improved diagnostics according to the Canadian Criteria with application of the available (immunological) bloodmarkers which are suggested by the international biomedical ME/CFS research.
Attention to the XMRV and MLV retroviral scientific research, and a constructive dialogue with the leading experts in this field.
The application by the SIHII of the ICD 10 in which ME/CFS is recognized as a neurological condition, in line with the WHO (World Health Organisation)’s recognition.
The organization of round the table discussions to come to a constructive dialogue between all parties involved: government, doctors, leading ME/CFS experts and last but not least the patient-groups whose voices have been consistently ignored thus far.
The foundation of a CFS training facility headed up by leading CFS experts who are involved in the worldwide biomedical research of ME/CFS. This centre should provide other doctors the opportunity to specialise in this condition, in order to increase the knowledge base of physicians about CFS and to ensure the condition gains credibility.
A pluralistic approach of the ME/CFS problems in order to break away from the monopoly of a one-sided psychological approach enforced by specific doctors, and allowing for a necessary broader and realistic approach with more attention to the physical aspects and mechanisms involved in the condition of ME/CFS.
The creation of a media campaign designed to free this condition of its controversial character with respect for the severity of this disease.
The design of a prevention strategy with particular attention to early diagnosis, which can be achieved given the approval of the use of available bloodtests which provide indicative information about the disease.
These demands are representative of the most urgent needs that deserve immediate attention. It should be a step towards a new and better ME/CFS policy.