Tuesday, October 11, 2011

Latest on XMRV and WPI

Ugh...I've been procrastinating on writing this blog post.  By now, most of you have probably already heard most of this news.  Honestly, we've just been in crisis mode here for the past month (or more), and I have been too wrapped up in taking care of Jamie and researching what might help him to have any mental energy left for summarizing the complex goings-on in the ME/CFS research world.  But I feel guilty for not keeping you up to date, so I will attempt to write a brief review of the latest news.

The latest XMRV study was published a few weeks ago.  Bottom line is that they were unable to reliably detect XMRV in ME/CFS patients.  Here's a good summary from the New York Times.  The reason this study was extra-important was that it was a multi-lab study; 15 previously-found-positive samples and 15 previously-negative samples were sent, blinded, to nine different labs, including Dr. Mikovitz's own lab at WPI and VIP Dx, the lab that has been selling and running commercial XMRV testing.  None of the labs was able to reliably find XMRV in the samples.  Only two labs in the entire study found any positive XMRV results at all, and none of the results was reproducible.  In some instances, even the same lab came up with different answers each time it ran the same sample.

Most alarming, VIP Dx could not get reproducible results.  This means that the same sample might sometimes come up positive and sometimes show negative.  That lab has now been shut down; there is no longer a commercial XMRV test available.

In the aftermath of this study, WPI (The Whittemore Peterson Institute) let Dr. Mikovitz go, as explained in this Wall Street Journal article.  In public statements, Dr. Mikovitz has said she is still committed to XMRV research and still has some grant money.  She is currently looking for another institution to sponsor her work.  WPI says, as stated in the above article, that they remain committed to ME/CFS research and specifically, research into retroviruses' role in ME/CFS. 

So, what does this all mean?  Is there really an XMRV?  Is it involved at all with ME/CFS?

From what I've read, it seems less and less likely that XMRV is the culprit in ME/CFS; however, I don't think anyone can conclusively say that for sure (though some have!).  XMRV could be just the result of lab contamination, as some claim, or it could just be something that is constantly changing and is therefore very hard to reliably detect.  The big NIH XMRV studies involving hundreds of patient samples are still in progress.

If you had your own blood tested for XMRV, you can't believe the results, whether they were positive or negative.  Even Dr. Mikovitz agrees with that; apparently, she recommended VIP Dx be shut down earlier.  So, what about the people who tested positive and have improved on anti-retroviral drugs?  Well, there are three possible scenarios: XMRV is indeed present but can not be reliably detected yet or there is another retrovirus present that has not yet been identified or the drugs had some other positive effect for reasons not yet understood.  A lot of "not yets" in there, huh?

So, yes, this is a bit of a setback for us, but I don't believe we are back where we started, as some have suggested.  For one thing, XMRV has brought unbelievable, tremendous attention to ME/CFS.  Before XMRV, can you even imagine the NYT, WSJ, Science, Washington Post, BBC, and other major news media all covering a story related to ME/CFS?  Now they routinely cover new studies and new information.  We are finally getting some of the attention that this debilitating illness deserves. 

With that attention comes interest (and funds!) for research.  XMRV opened the door for all sorts of new research possibilities into the causes of ME/CFS, with a focus on infectious agents.  Negative studies are absolutely necessary for science to move forward, in any field, and provide information that is often just as valuable as positive studies.  Scientists in many fields and at many different institutions now seem eager to build on what's been done and delve into the puzzle that is ME/CFS.  And that is a far cry from where we were just 5 years ago.


Renee said...

Wow...this really helped me with all that has been out there swirling around! Thank you Sue...so much.

Annie said...

Great summary Sue, thanks for making the time. I do agree, as you know, that at least there is a lot more scientific interest & public awareness out there thanks to XMRV - which moves the level of neglect of this condition to something slightly less criminal. Hmm emotive language but you know what I mean! Hope Jamie's feeling less ghastly. Have a good day. : )

Lara Gary said...

Thanks for your careful summary, Sue. I do agree that we're making progress. In the 23 years I've been living with CFS, I've seen a huge change from, "It's all in your head" to now having people say, "I know someone with that. I hope a cure is found soon."

Sue Jackson said...

Lara -

Yes, I agree about general public perception. Whenever anything new about CFS is in the news now, I have friends and family e-mailing and calling to tell me they saw a story about CFS - we've definitely moved more into the mainstream....finally!!


upnorth said...

I'm excited that this has sparked all kinds of research. I hope at some point it translates....so disappointed about XMRV...it seemed like a simple answer to a complex illness and I don't want us all to have to wait years and years more.

I think this is the most susinct sum-up I've seen Sue - well done.

I hope you find something that helps Jamie feel a bit better. Fingers crossed.

Anonymous said...

you seem to be handling all this stress so well! I so admire your strength and courage! I hope your son continues to improve! It's so hard watching our children suffer and not being able to ease their burdens! Thanks for your great blog....hobbz

Sue Jackson said...

Hobbz -

Ha ha...I just read your comment and had to laugh. You said I seem to be handling the stress so well, but I had just finished ranting to my sons about how I can't do all this anymore! Timing is everything, huh? Just so you don't think I'm yelling at a sick kid, they are both doing well this week, but my husband is traveling, and I am totally worn out from all the driving, cooking, cleaning, laundry, appts, etc., etc. I BADLY need a break and some time to myself.

But thanks for the nice compliment :)


Anonymous said...

OMG, I was just blessed with some good news from your post, and for some reason that is what I am choosing to focus on in this comment to you, Sue!

Simply put; my doctor was right! And the reason that means anything to me is because, as you know, I have been waiting for 14 years to find a doctor here in San Diego who is "worthy" to be the doctor of a CFS patient: ME!

Anywho, he had agreed with me many months ago that there was no need to test me for XMRV because, mostly, there was no known treatment for it.

Meanwhile..!... I send only loving kindness and healing to you and your beautiful family!

Love, Judy

Sue Jackson said...

Yeah, Judy, looks like my ID doctor had it right, too. She told me to wait to get tested because she sent identical samples to VIP Dx and got different results back.

We'll see what happens next!

Thanks for the kind thoughts.