Saturday, December 12, 2009
XMRV Task Force at Dept of Health & Human Services
I am curious about the link between XMRV and Autism.
Basic questions, like, is there even a link at all, seem to be outstanding.
As part of my researching, um, googling around, I found this interesting discussion:
new CFS/XMRV Task Force at Dept of Health & Human Services? - Chronic Fatigue Syndrome Forums (ME/CFS Forums) at the PHOENIX RISING.
In the discussion thread one of the people mentions a Dr Wanda K Jones, who apparently is Deputy Assistant Secretary for Health (Women's Health) at the US Department of Health and Human Services. Dr. Jones had sent some emails regarding a task force on XMRV at the Dept of Health & Human Services.
I wanted to know whether the task force was doing any looking at validating the potential link between Autism and XMRV. Her phone number was listed on the page. So I called her.
Imagine my surprise when, within 24 hours, she called me back.
Dr. Jones is a wonderfully no-nonsense person who immediately made me think that maybe, just maybe, at HHS they might know what they are doing. Also, and I appreciate this, she stayed on message the entire time, which made it easy for me to understand what she was saying.
Her messages were few and simple. I will try and repeat without messing them up:
There is a task force which is concerned with the safety of the blood supply.
safety of the blood supply is the single most important priority they have.
they do not really even know at this point if there is a real risk they are trying to mitigate, but HIV/AIDS taught everyone a really big lesson and they are now working hard to avoid a repeat.
The CFS angle seems obvious for validation work, so probably something like that is going on, somewhere.
the allusions to a link between XMRV and Autism were based on a single very poorly conducted study. It may be that the linkage is being looked into somewhere by somebody but wow, just wow, was that a poor idea to bring that up based on the evidence that was presented.
did we mention that the safety of the blood supply is our primary concern just now?
Based on the discussion we had, it seemed clear to me I was looking in the wrong place, but that in doing so I had been provided a clear sense of priorities in Government science: The priority is to protect the majority of the population from a perceived threat, in this case XMRV.
If XMRV were a Flu, the response would be a vaccine. But it's not, so the response is a large working group developing quick screens and tests, applying those to existing samples from the blood supply, and developing a chain of evidence and capability to enable them to decide if the blood supply needs to be protected from this retrovirus.
They are doing this very very quickly. It was indicated to me, that for the good of everyone, this work should really not be disturbed. Soon enough, once the blood supply question is settled, and maybe as part of that process, the question of the contribution of XMRV to disease can be addressed.
At least, that seems to be the plan.
In the meantime, I think I will look around some more and see if I can get anyone to tell me what Autism specific research plans are getting under way.