CFSAC 2009 day 1        CFSAC 2009 day 2       CFSAC 2010 May 10


In a joined effort of members of The Barborka Family,  CFSKnowledgeCenter, CFSUntied, Diagnose Support Teejkay and P.A.N.D.O.R.A., Inc., the reconstruction of the CFSAC video's is in progress. In future, all relevant video's will be uploaded onto several channels in order to prevent the loss of information due to circumstances.


Video's of Day 1 and 2 are now uploaded. Video's of May 10th 2010 ar now being uploaded. Please click the image to view.

After the initial publication of the Whittemore Peterson Institute in Science magazine where it was stated that 67% of their ME/CFS samples tested positive for XMRV, a few other studies came out which basically stated that no XMRV was found in Germany and the UK. We have heard however that some of the original samples used by WPI actually came from Europe and that also European ME/CFS researchers have found XMRV in patients here but unfortunately this last part is referring to yet unpublished data. We have also heard from a few patients ourselves who were tested postive. More will undoubtly follow when a WPI validated laboratory is established on this side of the Pond where people can request the test themselves and when more studies in Europe are executed in collaboration with WPI.

The significance of finding a cause for ME/CFS, Fibromyalgia and other related disorders is worldly underestimated. The prevalence of ME/CFS is 1% of the population, Fibromyalgia about 1.2%. In short, millions and millions of people world wide are affected. Unfortunately not all those patients are aware that there is current research taking place to identify biomarkers and find an underlying cause. If they were, we would have a world revolution on our hands….

A research project pointing out the association of Chronic Fatigue Syndrome with Metabolic Syndrome has just been published. Although this particular research was conducted including patients chosen based on the Emperic Criteria (Reeves, 2005), there could be a possibility Metabolic Syndrome is a specific illness that would require investigation if your labwork shows the individual markers for this illness. Please consult your health care practitioner for more information.

The conclusion of the study was that "CFS was associated with metabolic syndrome, which further exacerbated fatigue." At best some ME/CFS patients may also suffer from Metabolic Syndrome, an issue that can be addressed and might provide some relief and long term protection.

• Petition for The Netherlands - (international signatures accepted)
• Petition for Spain - (citizens only)
• Petition international - (international signatures accepted)
• Petition for the UK - (citizens only)

Please find below a list of patient questionnaires. The information you will provide will be directly send to the research group that is listed in the url and/or the questionnaire. Diagnose Support will not see the information.

Some questionnaires accept international submissions. We are assuming the information will be distributed amongst scientists globally. Some questionnaires are only used to collect information, others are simultaneously a registration for participation in research programs and/or clinical trials. Please note that filling in the questionnaires does not obligate you to participate should you be selected. At any time you are allowed to withraw without explanation.

• Whittemore Peterson Institute Patient Volunteer Form (international applications)
• Dr. Nancy Klimas, M.D. of the University of Miami ME/CFS Case Definition Survey

Soon, if not already, theories as to which treatments against XMRV might be successful will arise. We will try to inform you about which treatments are discussed in the press, expert blogs and research papers. We strongly advice you NOT to proceed to start any treatment before more news regarding the causality/contributing factors is out and/or without consulting a knowledgeable physician.

• Links to XMRV Treatment information
• Overview Testing for XMRV

DIAGNOSE SUPPORT - A Global Initiative to Advocate for Objective Diagnostics,Biomedical Research and Effective Treatments for patients with Neuro-Immune / Neuro-Endocrine-Immune disorders

 

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