An Introduction to ME In The World

Hello and welcome.  This is my first attempt at a blog and and this is my first, fledgling post.  I hope to cover news about M.E. otherwise known as Myalgic Encephalomyelitis or more recently Myalgic Encephalopathy, henceforth abbreviated as ME.  Here in the US, the illness is often known as Chronic Fatigue Syndrome which is the demeaning name the CDC gave this affliction in the 1980s.  That is probably either too much history (for those who know all of this or much, much more) or too little (those new to all this) but I'll leave it at that.

I really don't know what shape this little endeavor will ultimately take.  My initial idea is that posts will be pretty short with a post consisting of a news item and my take on the subject and perhaps some additional links for more info.  I'm not up physically or mentally to doing extensive pieces or doing something on a regular timeline.  I also opted to forgo any sort of planning or research into blogging tools, I just jumped into this thing so forgive me whileI learn as I go.  So those are the only apologies I'm a going to make. :)

Today's brief installment is on the FDA's Blood Products Advisory Committee (BPAC) December 14-15, 2010 meeting during which they will hear about the XMRV Blood Working Group (BWG) resnults, specifically 1:00-3:30 EST.  Written comments have been taken in advance of the meeting and live comments will be taken from 10:15-10:00 and 3:45-4:30.  Presumably XMRV-related comments will primarily occur during the latter comment period, depending on the number.

I expect the BPAC to make a recommendation to defer CFS donations as a "precaution" until more is known about XMRV and related MLVs.  I further expect to be disappointed by the level of information made available to the public about the storage and handling procedures (which perhaps could tell us something about the negative studies) and the assay results using actual blood samples from positive and and negative controls rather than spiked ones as was done in phase I.

Perhaps the CFIDS Association of America's webinar, the description which follows:

In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco will provide an update on the Blood XMRV Scientific Research Working Group studies, including results from Phase II, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the SRWG, will serve as moderator for the discussion.

For updates as the FDA meeting unfolds see this post at mecfsforums.com (registration required).

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