Wednesday, June 1, 2011

Kelly's XMRV Comments

Kelly has been scurrying around posting the following type comments hoping
that they will click with someone if not the journalist who wrote the piece.
My favorite was some guy who wrote into US News and World Report sounding
very scientific about why viruses are not involved in CFS. Kelly had far too
much fun poking very polite factual holes in his blather. He hinged his
comments on incorrect scientific information which I was able to demolish
with the aid of Vincent's site which then made my assertions about viruses
in CFS all the more credible.

Anyway, here's what I wrote on one site. I know patients want to hang onto
XMRV, but I'm more worried about the long term if XMRV doesn't pan out - and
it is not looking good. I'm afraid opponents such as the CDC will use XMRV
as an excuse to stop all virilogical studies regarding CFS.

XMRV may no longer be considered a viable etiology for CFS, but many of the
researchers who have published negative studies such as Dr.Konnie Knox and
Dr. Jay Levy's group and Dr. Ila Singh's group from the University of Utah
have all stated that they believe CFS is initiated by one or more viruses
and that viral research into CFS should continue - just not on XMRV. Dr.
Vincent Racaniello,whose award winning virology blog is visited by
scientists and lay people alike, agrees saying that a faulty immune system
also seems to be a piece of the puzzle.

It was gratifying to see that Vincent Racaniello is on the record saying CFS
is an infectious disease with immune dysfunction caused by viruses. I never
envisioned the wild ride and twists things would take when I made his
acquaintance in early 2009, but it was worth it in the end I think to gain
such a popular ally who is teaching the microbiologists of tomorrow. It
seems ages ago that he told me the CDC was emailing everyone and their
cousin trying to squash XMRV and viral involvement in CFS in the fall of

Tina asked me if you had put the ICD-10CM stuff up on your site and I told
her I didn't know.

I recently joined a group of professional health journalists where I have
the option of writing a piece on a topic of my choice. I think I'm going to
just ignore things for a time in order to focus on an article on reporting
on diseases where psychiatrists claim one thing and biomedical researchers
claim another. I truly believe that without journalists putting solid
biomedical information out in the public sphere it will be harder to
maintain pressure on the NIH and the CDC.


I learned very early the difference between knowing the name of something
and knowing something.

   Richard Feynman The Physics Teacher Vol. 7, issue 6 (1969)

1 comment:

Aging Boomer said...

Hi Kelly,

I wasn't reading blogs and forums when the Lombardi, et al study came out. At the time, did you blog about the CDC's emails to squash XMRV? If so, I'd very much appreciate a link to the blog at the time. I've searched through a number of your posts from about that time, but couldn't find.

Great thoughts here!