Finally finished using priscellas letter which I made a lot shorter.. ..halved it (so its just one page to hand out at medical conference). This is what its going to be. (no more will fit and I wanted to leave most of the info that the Aussie researcher found as I thought other Australians may be interested more seeing it was Aussie research). A big thanks to priscialla.
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Dear Doctor/Researcher,
The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
In the Introduction it states "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.
Some recent research which caught the attention of ME/CFS clinicians and researchers worldwide:
The October 2011 Journal PlosONE published 'Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatrigue Syndrome. A Double-Blind and Placebo-Controlled Study ' at :
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
http://www.ijcem.com/files/IJCEM1204005.pdf
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
http://www.translational-medicine.com/content/10/1/88/abstract
Report of the Invest in ME 2012 International ME/CFS Conference held in London
http://www.investinme.org/Documents/MECFS Conference 2012/Ros Vallings IIMEC7 Report.pdf
Twenty prominent international researchers and clinicians were invited to speak including two Australian researchers.
The keynote speaker was Professor Don Staines (Gold Coast, Australia). He presented auto-immunity as a plausible hypothesis in the aetiology of ME/CFS. He discussed the research programme being undertaken at Bond University over the past 8 years.
Dr Sonya Marshall-Gradisnik (Gold Coast, Australia) presented her work on immunological dysfunction as possible biomarkers for ME/CFS. She pointed out initially that the pathomechanism is unknown, there is no diagnostic test but there is evidence of immunological dysfunction. NK cell function is down, Treg function is implicated in ME/CFS, and research into B cells suggests an auto-immune disorder. There is significantly reduced NK cell function in ME/CFS, which is consistent over time. There are 2 types of NK phenotypes: dim and bright. The dim seem unaffected in CFS, the bright very much decreased. This is consistent over time in this illness. NK cells are regulated by Tregs. One KIR receptor is associated with NK cell lysis reduction. mRNA gene expression relates to GZMA lytic protein which is significantly decreased in ME/CFS – this is a potential biomarker
Many research articles over the years have identified underlying biological abnormalities found in ME/CFS such as those listed under References at the end of the ME:Criteria, and the ME: Primer referred to below. The Primer for Clinical Practitioners (ME: Primer) is available providing advice on how to diagnose ME, which clinicians may find useful at:
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf "
Now I need to decide how many of these pages to print.. as I have no idea how many doctors/researchers would be interested. 50? 100?