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!

Monday, August 16, 2010

Dr Katz presents a webinar about XMRV in the blood supply

The first quarter of the webinar is more about details of blood banking and testing that are not specific to XMRV or ME/CFIDS.  After that, he turns his attention to both the disease and the virus.  Here are some points of interest:

Here is the link:

He notes that the more names there are for a given illness, the less well understood that illness is.  CFS has had many names, including Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis, and XAND which stands for X-associated Neuro-Immune Disease.  The name XAND was proposed by people at the Whittemore Peterson Institute because of the suspected association with the XMRV virus.

Prevalence of CFS in US is estimated between 0.4 and 1 percent of population.

A study published in the Journal of Infectious Diseases found that there are a number of genes expressed differently in people with CFS then in healthy controls.  These abnormal gene expressions are similar to those found in diseases of the hemenologic system, cancer, autoimmune disease,

XMRV is a gammaretrovirus that causes leukemias and sarcomas in other animals, including primates.

XMRV is closely related to xenotropic MLVs, which are murine leukemia viruses found in mice.  These viruses can be isolated from the genomes of mice and are then able to cause disease in other animals (this makes me wonder if XMRV came from biologics grown in animal tissue in the lab, such as vaccines?).

In 2009, a paper was published in the Journal Science that found XMRV in 67% of patients.  Dr Katz points out that the study looked for evidence of infection in several different ways, which makes the evidence stronger.  It was found in 3.7% of healthy controls.  Four further independent studies have not fund XMRV (although at least in some cases, they used very different methodology and looked in different places) in CFS patients.  Another study is expected imminently and is expected to confirm the WPI findings. 

The CFIDS Association of America has advised against people with CFS donating blood or organs because of the possibility of a virus such as  XMRV being transmitted.