English version
National ME/CFS protest action in Brussels 14th of March 2011:
Call in the interest of all patients who suffer from ME/CFS and fibromyalgia in Belgium!
Because the government policies regarding the above mentioned conditions remain seriously inadequate, a national protest is being organised.
The policies regarding ME/CFS are one-sided, inhumane and contrary to any scientific logic. Worse still, instead of considering the medical and social needs of this patient-group the State Institute for Health and Invalidity Insurance (SIHII) prefers to engage in a witch hunt against doctors who are concerned about the care of these severely ill people. The monstrous fine of 635.000 euros incurred by two CFS specialists through the SIHII is a fine example of the indifference against the ME/CFS issues.
AS PATIENTS WE HAVE HAD ENOUGH!
Please join us, with your friends and family in Brussels on
Monday the 14th of March 2011.
We will be visiting the Ministry of Health to call for attention towards the lingering issues faced by ME/CFS and fibromyalgia patients. We are hoping to gather a few hundred patients and their supporters to join us in our walk towards Minister Laurette Onkelinx.
At 14.00h: Orde van Geneesheren (Order of Physicians) Place de Jamblinne de Meux, 34-45 (start of dr. Coucke's final hearing), Brussels.
At 15.15h: Ministerie van Volksgezondheid (Ministry of Public Health, Minister Laurette Onkelinx' office) Handelsstraat/Rue du Commerce 70, Brussels.
Participation in this protest needs to happen using the buses which the organisers have layed on from various locations.
Important!: Who goes by car is outside the control of the organisation!
* Registration: see 'info buses' (left menu)
* Programme: see 'info action agenda' (left menu)
Every participant in this protest is bound by the rules and regulations of the City of Brussels Police Department, and is expected to uphold them.
These regulations can be found on www.brussels.be – under prevention & safety/police/general police regulations.
This action is an initiative by patients for patients
We are hoping for a massive turnout!
Programme of events 14 March:
First we are visiting the Order of Physicians where Dr. Coucke is appearing before the National Advisory Board. Our presence is in support of this doctor. It is intended as a sign of protest against the Order and the SIHII who are abusing their powers with dubious reasoning to infringe upon the activities of CFS doctors.
We are arriving at the Order (de Jamblinne de Meuxplein 34-45, 1030 Brussels) around 2pm. When Dr. Coucke arrives we welcome him to loud heartfelt applause. The hearing of the National Advisory Board starts at 3pm. Those who wish to can attend the hearing. There is room for a maximum of 40 people in the boardroom. The rest of the group returns to the bus around 3pm to continue our route to the Ministry of Health.
Arrival at the Ministry of Health (Handelsstraat 70, 1040 Brussel)should be around 3.15pm. We are gathering in front of the Ministry building for a peaceful protest. A delegation is visiting the Minister of Health Laurette Onkelinx. Participants are allowed to bring a folding chair in order to create a sit-down protest. We are staying in situ for an hour and a half, after which we are returning by bus to the National Order of Physicians.
It is allowed to bring banners, black flags or placards.
Points of action
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.
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