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Support the patients in The Netherlands and sign the official petition at Petities.nl
Please click here for instructions in English how to sign the Dutch petition.
PETITION TEXT, a google translate from Dutch:
An estimated number of 200,000 patients in the Netherlands with typical MS-A, Non-genetic Autism, Alzheimers Youth, Malignant Lymphoma, Prostate Cancer, difficult to define complaints, CFS / ME (Chronic fatigue) and Fibromyalgia - also known as X-AND patients note:
1. That the Dutch government, the UWV and the medical community in the Netherlands international vision has not yet taken the aforementioned problems of Neuro-Immune diseases should be classified. As a result, insufficient funds and interest in Dutch medical research centers to participate in the international biomedical research leading to improved living conditions of the above patient groups may result.
2. We also note that said Dutch authorities internationally published biomedical research (see below) is not accepted as biomarkers for recognizing the degree of the symptoms of these patients or as a basis for further research into the origin of the complaints.
-) Neuro-Immune Diseases associated with a range of recently established retrovirus XMRV(1) and (2) and (3). Further research should determine whether Neuro-Immune Diseases should be classified as to Infection Diseases.
-) Cytokine abnormalities in blood counts of many chronically ill patients, which may serve as a biomarker for the presence and / or degree of their complaints. Research by N. Klimas 12 nov.2009
-) Mitochondria dysfunction, Research by Heirs Group, November 2009
-) Not to publish research by M. Maes what CFS / ME / FM patients to distinguish patients with symptoms of psychological nature: "Increased immune complexes in Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS), but not in major depression: relationship to duration of illness and fatigue and somatic symptoms. Maes M, MIHAYLOVA I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E. 2010.
-) It related to HIV co-infections EBV, CMV, HHV-6, HHV-7, etc. occur in neuro-immune (1) and (2)
-) Immunological abnormalities such as cytokine abnormalities, decreased Natural Killer cells, defects in CD4, T and B cells occur. (1)
(2) (3) and (4).
3. That the UWV patients with neuro-immune severely ill still no (adequate) and their co-payment grant thus deprived of rights to personal assistance and special assistance. The 'hours criteria "do not take into account the time a patient needs for his / her personal interview as, care, shopping, housekeeping, social activities. These points should be made within the number of hours that a patient can operate in total, not additional to the number of hours that a patient is deemed able to work.
4. That Dutch health centers, physical therapists, the UWV, GPs and CVS centers still Cognitive Behavior Therapy and Graded excersise offer the only option for treatment of many neuro-Diseases. This while scientific research published this year (2009) has shown that "GET" the physical and mental therapies of these patients worsened. Research by M. Maes and Declaration M. Maes. In addition, the selection criteria of the Dutch CBT / GET centers not internationally accepted. So were patients who were physically unable to participate or were faced with dismissal procedures excluded from participation or the UWV. The experience of participants has often not positive Cognitive behavioral therapy from the perspective of the patient. And we refer you to the Disciplinary Tribunal ruling CGT physician may not impose conditions requiring. Biomedical causes patients not only to investigate and CBT / GET available to get patients in a very serious isolation. Patients want to participate in society, but can not. Cognitive Behavioral Therapy is possibly a way for people to cope with their new limited way of life due to a chronic disease, but can not cure the disease, in contrast to what is sometimes mirrored. Other (chronic) diseases are not cured with this therapy. Patients with CBT / GET counterproductive, ineffective and poorly treated.
5. Not only the imaging of neuro-immune diseases in the Dutch government, the UWV and the Dutch medical community, but also the public attention these diseases far behind the reality because they are seen as psychosomatic disorders largely in place as what they are: Neuro-immune and / or infectious diseases which further research questions and adequate treatment so the quality of life for patients as much as possible.
And the signatories of this petition request
1. The Dutch government is to ensure that the above Neuro-Immune diseases are classified as such and the Dutch government makes available funds for further research into the biomedical causes, connections and neuro-immune treatments for patients, preferably in Dutch Cancer Institutes and Immunolgische Specialists Centers.
2. Furthermore we ask the Dutch government approval for the aforementioned biomarkers as diagnostic criteria and the internationally recognized guidelines for research as a basis to establish the diagnosis and treatment of Neuro-Immune Patients. This may express itself d.m.v. the availability of diagnostic tests for neuro-immune patients to the aforementioned bio-markers. And by treating it established infections / nav deviations above examination in order to quality of life for patients.
3. Furthermore, we request the Dutch Government to ensure that the directives of the UWV for determining the level of function rings neuro-immune patients adapted to the internationally accepted standards, such as that of Prof. D. S. Bell to work for and to the assessments of patients at least 2 hours per day to withdraw from the score allocated hours for personal maintenance, care, household and social activities.
4. We ask the government Nederlanse URGENT ensure that from the Dutch health centers, physical therapists, the UWV, GPs and CVS center, imposed and / or recommended Cognitive Behavior Therapy and Graded excersise for Neuro-Immune Patients and also use subjects of scientific research to further investigate these therapies are put stop because therapies have been scientifically proven as harmful and having various pharmaceutical therapies have been proven the quality of life for patients is indeed to promote. Further research on the unnecessary use of GET for these disorders with the objective of healing, injured the health of participating patients.
5. The government publicity campaign to the imaging of patients, their relatives, medical (support) staff and the general public to make into reality, in line with the recently published scientific studies.
Further information is available at the following websites:
Whittemore Peterson Institute
Video Presentation Experts implications XMRV
CFSAC
P.a.n.d.o.r.a.
CFIDS
Diagnose Support
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