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CFS Advisory Committee Meets

The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.

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Donate to Columbia's Center for Infection and Immunity

The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.

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Dr Hornig’s talk in Sweden now available

Dr Hornig went into more depth about their published cytokine work, as well as what they are working on and trying to achieve. The talk was jam-packed with great science and information. Dr Hornig talks about the crisis in funding, looking at gene expression and gene variants, screening for up to 1.7 million vertebrate viruses, metabolomics, looking at how the immune system and the microbiome could affect metabolism and the brain – and much, much more!

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Share #DontIgnoreME films to raise awareness

This M.E. Awareness Month, our is simple: don’t ignore M.E. To spread this message, Action for M.E. launched three films as part of M.E. Awareness Week. Starring Sharon and Douglas, who have M.E., Sharon’s partner Connor, and our medical advisers Dr Gregor Purdie and Prof Julia Newton, each focuses on a different aspect of M.E. and its impact.

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UNSW tests graded exercise on mild CFS patients

Australia’s University of NSW’s Psychiatry Department tested a graded activity program on 25 patients with chronic fatigue syndrome. Before the study, patients could complete around 4 hours of ‘moderate intensity exercise’ a week (self-reported). It was not measured or recorded at the end of the program but the study found small improvements in cognitive performance, with some caveats.

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RCCX Project, Inc.: Explore Role of RCCX Module in Familial Chronic Illness Clusters

Physician and patient, Sharon Meglathery MD, describes how she developed the RCCX Theory as a result of clinical observation, being a patient herself and having another patient mention the RCCX. She explains that the full theory is on her website www.rccxandillness.com. She then talks about meeting Karen Herbst MD PhD Endocrinologist through the website and setting up an IRB to study the RCCX Theory. Finally , she describes developing a non-profit to fund research into the RCCX module’s possible connection with familial chronic illness clusters (EDS-HT, CFS, FM, Lyme, MCAS, POTS, Psychiatric Spectrum, Pain, Autoimmune/Immunological, Endocrine, Adipose, Neurological Disorders, etc.). Donations can be made at www.rccxproject.org.

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Contribute to #May12BlogBomb in 2016!

May 12th Awareness Day is a great day to share a blog post. If you are writing a post, please consider using the tag #May12BlogBomb when you share your post on social media, and, also submitting the blog link for inclusion on the 2016 #May12BlogBomb Link List that will be collated on Sally Burch’s blog Just ME

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