This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, March 5, 2011

Finding XMRV in a CFS cluster

Many people don't realize that CFS (Chronic Fatigue Syndrome), and the other names by which this disease is known such as Atypical Poliomyelitis and Myalgic Encephalomyelitis, is a cluster illness, meaning that there are outbreaks of many cases close together in a geographical area.  This aspect of this illness (or variations of an illness) has been downplayed, perhaps because it strongly implies a contagious etiology. 

The Wall Street Journal recently did a piece about Lyndonville, a town in upstate New York that was epicenter to an outbreak of CFS back in the 1980s (a decade that saw many outbreaks).  This outbreak has been studied because it was a very large relative to the small population of the town, it struck many young people, and the same small town doctor has been seeing these people for 25 years.  It was found recently that 70% of the people in that outbreak tested positive for XMRV.  Here is the WSJ piece:

The following video (although overly melodramatic) lists many of the outbreaks of the 20th century that are believed to be ME/CFS.  While undoubtedly some of these clusters were other illnesses, and in many cases so much time has passed that there is no way to go back and verify that it is indeed ME/CFS that occurred, I think it is still interesting to see the dates and locations of these outbreaks.  The ones that interest me the most are the one in Sacramento, CA in 1975, San Francisco Ca in 1984, and the series of outbreaks around Lake Tahoe and central California beginning in 1984 as it is plausible that I was infected in one of these outbreaks.  The sources for the epidemiological data are listed at the end of the video.