Wednesday, July 14, 2010

XMRV Webinar Tomorrow & Update

The CFIDS Association is hosting another webinar, tomorrow July 15 at noon Eastern time.  This one is an update on XMRV, with two speakers who are both top-notch CFS scientists/doctors - should be a good one!  I won't be able to attend (again!) because we're having our second Mom lunch tomorrow with the other local moms who have kids with CFS, OI and/or Lyme.  This time, most of our kids are coming along, so that should be fun.  Anyway, check out the CAA website for full information on the XMRV webinar.  If you're able to participate, let me know how it goes!

This may be old news for many of you, but there was apparently some big news on XMRV while we were away on vacation.  I missed most of the hubbub (which was kind of nice), but here's the gist of it:
(I apologize in advance to my non-US readers for all of the acronyms - all you need to know is that they are ALL US government agencies) -

Apparently, the NIH and the FDA sponsored a joint study on XMRV in which they found the retrovirus in 80% of the CFS patients tested.  So far, so good, right?

At the same time, the CDC conducted a study of XMRV in CFS and failed to find XMRV in ANY of the patients they tested.  No big surprise - Reeves was one of the study authors and not finding XMRV supports his longheld belief that CFS is mainly psychological.

So, both studies were scheduled for publication (in different publications) at about the same time.  Someone in the government got wind of this and, apparently to avoid embarrassment, they stopped the FDA/NIH study from being published but allowed the CDC one to go forward.  This is when an uproar began among the CFS community.

That's where things stand currently, but everyone knows about this other study that found XMRV in CFS patients, so I don't imagine they'll be able to hold back its publication much longer.  I heard the main author - a highly respected virologist - is doing some extra testing to verify his results.

If you're interested in the details behind all this, then, as always, Cort Johnson at Phoenix Rising wrote an excellent summary of the whole complicated controversy.

So, now it's time for our UK friends to think, "Wow, they're even more messed up over there than our own government is!"  It seems to go back and forth, doesn't it?

As for me, I'm crashed today - sore throat, aches, pounding heart, the works.  I managed through the first three days of my period pretty well, so I'm not complaining.  I canceled my plans to go to my library book discussion today, but it's the first horizontal day I've had in a long time.  Lots of reading today...

5 comments:

  1. Glad you are taking care of yourself today. A reading day is always a blessing.

    I had heard something about the hoopla, but didn't realize they had published the CDC study. I thought they were holding back on both. That's incredible. I did sign a petition requesting them to release the science. Amazing what politics can do to science, isn't it? Still, it is all so hopeful!

    Thanks for the information -- you are always fantastic.

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  2. Oh, I count on you to watch these things for me and tell me what they say ;) (like you need more responsibility, right?)

    That's great that you have a group of folks that understand what you're going through - and sorry that you're crashed. I sympathize. Big hugs.

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  3. I didn't know Dr. Racaniello is a top CFS scientist?

    Btw, the controversy over the NIH/FDA paper was in the NY Times today: http://www.nytimes.com/2010/07/14/health/14fatigue.html?_r=4

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  4. David -

    I was just trying to keep things short and simple in yesterday's post - to clarify, Dr. Racaniello is a top virologist in the US and he'll be speaking about XMRV and its relationship to CFS. Should be a good program -

    Sue

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  5. Thanks, Peryl -

    Love the new profile pic! Is that a little Power Ranger next to you??

    Sue

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