belgian ME action

Discussion in 'Chit Chat' started by orchidee, Nov 21, 2008.

  1. orchidee

    orchidee New Member

    September 30th 2008, Belgium : the Federal Knowledge Centre for Health Care and the National Health Advisory Council reported that the reference centres for ME/CFS did not reach their goals, that patients were not cured and that further financing of this project was being questioned.

    The poor results of the centres have as probable cause, that ME/CFS remains a neurological disease, with immunological and hormonal anomalies.

    Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), practiced in these centres for years, were not only inefficient, but also HARMFUL for the patients. The reason for these abhorrent poor results is a fundamentally wrong approach of ME/CFS in these reference centres.

    These centres were already assessed in 2006 and this audit was also negative. Notwithstanding this negative audit, the centres continued to receive funding from the government up to now. Before the end of this year, this means very soon, the Belgian government will decide upon the possible further funding of these centres – and so they will decide about the fate of the ME/CFS patients in Belgium, approx. 30.000 to 40.000 patients.

    Despite of the abundant biomedical research of the last few years, many health care workers, medical doctors, the National Institute for Health Care and Invalidity (RIZIV), Health Care Insurance companies, private insurance companies, remain ignorant about the development and the progress of this biomedical research. ME/CFS can be clearly diagnosed by means of specific blood analyses and other tests.
    The most important anomalies that can be clearly demonstrated are a disturbed immunity, various chronic infections, a low exercise capacity, a very poor recuperation ability (exercise intolerance), memory loss and concentration problems, a disturbed cardiac output, a disturbed metabolism, hypo-perfusion of the brain, and gastro-intestinal problems.

    The Belgian government still stubbornly refuses to acknowledge ME/CFS as a physical condition. As a direct result, ME/CFS patients are only treated as psychosomatic patients with CBT and GET, despite of the fact, that 4000 (!!!) research papers strongly contradict the benefit of this approach and especially consider GET as HARMFUL.

    The existing biomedical knowledge was and is systematically ignored by the reference centres. Despite of the fact that, since 2003, there is a clinical definition, they continued to use subjective and obsolete criteria, which can result in a wrong diagnosis. Moreover, badly impaired patients were systematically refused for a treatment in these centres. The success rates of 40 % and even 70 % that are referred to by the centres are strongly distorted figures. Spontaneous recovery of 32 % (as demonstrated by Prins et Bleijenberg) certainly influences these “success” figures.
    The adequacy of CBT in ME/CFS patients in daily practice is non-existent : there are more patients who report a setback than patients who feel better. Research has proven that GET can be harmful and exacerbates the symptoms.
    The following question pops up : why are patients in Belgium forced to undergo these therapies, despite of the bad results ? There is an urgent need for change of policy and treatments based on biomedical findings. Furthermore there is need for a thorough information campaign aimed at MD’s, Health Care Insurance companies, expertise doctors of private insurance companies etc….in a way that ME/CFS patients can receive the care and treatment they need.
    Moreover, a timely diagnosis and a patient-tailored treatment can avoid a lot of unnecessary suffering. Children who receive early in their illness a correct biomedical treatment have a great chance to recover completely. It is a crime to deny this !
    The government can help by subsidizing the biomedical research and to transform the reference centres to specialized centres that treat the patients based on biomedical research, which leaves no doubt about the nature and the treatment of this serious condition.
    The WHO and several countries, such as Canada and the USA, recognize ME/CFS as a neurological condition.
    In Europe, the government of Norway and Catalonia (Spain) have finally come to the same conclusion and they will start biomedical centres to treat the patients. No psychiatrist is involved in these centres.

    The patient advocacy group MEAB ardently wishes that the Belgian Government will follow the example of Norway and Catalonia.

    The available funds should no longer be wasted to reference centres which have demonstrated their incapability.
    The biomedical research deserves all the support it can get to improve substantially the quality of life of ME/CFS patients, by using and elaborating tailor-made treatments and to continue the research for the exact cause.

    We demand :
    - the recognition of ME/CFS as a neurological, immunological and endocrinological condition;
    - to change the name CFS into ME;
    - to develop an “objective” protocol for diagnosis and establishment of disability by means of the Canadian Criteria (2003) in stead of the Fukuda criteria (1994);
    - a shift from the bio-psycho-social model to a biomedical approach;
    - the foundation of an independent biomedical commission;
    - the foundation of regional knowledge centres;
    - the foundation of a parliamentary investigation committee;

    The patient advocacy Group MEAB.vzw, or Myalgic Encephalopathy Association Belgium, defends the interest and concerns of the large number of patients in Belgium with Myalgic Encefalomyelitis (ME), popular better known as ‘Chronic Fatigue Syndrome’ (CFS).The MEAB group wants to inform everyone involved. The MEAB group wants to put the biomedical research under the attention of the government, with the aim of adapted measures being taken to enhance the quality of life of ME-patients.

    CVS-online, Information network for CFS/ME and Fibromyalgia, is an informative website aiming at informing patients and others involved with these conditions, and facilitating contacts with fellow-patients.

    United we stand!