Friday, January 21, 2011

XMRV: Frequently asked questions

Every now and again, I write about XMRV research as it pertains to ME/CFS (myalgic encephalomyelitis, aka "chronic fatigue syndrome"). Readers who are part of the ME community understand why it's important, but others may wonder why I keep writing about the medical thingy with the funny name. If you're one of those people, this little FAQ is for you.

What is XMRV?

A retrovirus, similar to HIV. Xenotropic murine leukemia virus-related virus was first discovered in 2006.

What's the connection to ME/CFS?

In October 2009, the Whittemore Peterson Institute for Neuro-Immune Disease and the Cleveland Clinic found that a significant majority of ME/CFS patients tested positive for XMRV, as compared to only 3.7 percent of healthy subjects. Another study by Alter and Lo found a link between this disease and MLVs—other retroviruses related to XMRV.

Does XMRV cause ME/CFS?

Unknown. It may be the cause, in the same way that HIV eventually leads to AIDS, or it may be one of many opportunistic infections that occur because ME/CFS patients' immune systems are already compromised. We'll need further research to tell cause from effect.

Why are you even writing about this? I read that recent studies showed there was no real link between XMRV and ME/CFS—that the positive results happened because of a lab contaminant.

Not exactly. Those four studies—by amazing coincidence all published on the same day—showed that it's possible to get false positives via contamination if you use a method of testing called PCR. They didn't disprove the studies that had previously been done.

OK, but don't the "contamination" studies at least cast doubt on the link between ME/CFS and XMRV?

Again, not exactly. The Whittemore Peterson Institute was keenly aware of the potential problems with PCR and used multiple methods to detect XMRV. Antibody testing, for instance, revealed that patients had antibody responses to XMRV. It isn't possible for a lab contaminant to cause antibody responses.

You can read a more in-depth explanation from a virologist here.

Has XMRV been linked to any other diseases, or just ME/CFS?

Some studies have found XMRV in patients with prostate cancer (where it was first discovered), chronic Lyme disease, and autism.

No offense, but I don't have any of those diseases. Why should I care?

Because it's infectious. There's a chance that you can contract XMRV the same ways you do HIV.

No problem. I always use condoms, and I don't shoot up with dirty needles.

That definitely helps! Unfortunately, there's a pretty good chance XMRV is also in the blood supply. Try not to need a transfusion.

If it's that big a problem, I'm sure there's already tons of grant money rolling in for XMRV research. We'll have treatments soon, right?

Remember how funding for AIDS didn't take off until it was a full-blown epidemic ...?

Yeah, but certainly we've learned from our mistakes.

It would appear not. As yet, the Whittemore Peterson Institute receives NO federal funding to study XMRV.

Gah! Do they take donations?

Thought you'd never ask!


Anonymous said...

I really enjoyed reading that, it is so important to carry on with XMRV research but as you say just like AIDS are they waiting for a full blown epidemic.

Teri said...

Well done Cinder.I just got back on FB after a week of ME hell so I'm just looking at these for the 1st time.I'm going to try my hand at it after I sleep a bit.Keep up the good work I thought your piece was very well done.To the point so people who are not sick will actually take the time to read

Carole said...

Great blog on XMRV ...Thank you for such a well written and easy to read explanation of it all.x

Nicky Reiss said...

Love your question and answer style!

LLizard said...

Very readable.
Great, easy-to-understand info on XMRV.

Anonymous said...

Very easy to follow and great explanation of the link between XMRV and ME/CFS


Eliza said...

What a simple straight forward way to make things clear for every reader! :-)
Hope these questions/answers will hit home and more people will become aware of why our patient community is acting up lately.

Andrea Pring said...

Easy-read, concise and straight to the point - perfect for sharing the what-where-how of XMRV.

Dr Speedy said...

Great blog on XMRV ... Thank you Cinder Bridge

one question, should we GET tested now ?

cinderkeys said...

Thanks for all the comments thus far, guys. Keep 'em coming. I'll also be interested to hear from people who don't have or know anyone with ME. If I've been unclear about anything, they're the ones who won't be able to fill in the blanks.

Dr. Speedy: That's a great question. I'm a little afraid to include it here because I don't know an easy answer. If you can spare the money, and taking the test isn't a physical hardship, there's no reason why not to. Maybe people will start taking your symptoms seriously. But a lot of sick people can't easily spare the money, and there isn't treatment for XMRV yet.

What do you think?

Anonymous said...

Cinder Bridge, thank you for a great blog. I love the style and loved the ending - bringing them to the donate button. Fabulous!! All the best, thank you for doing this.

Kari said...

Thank you for your post on this important subject, it is so very much appreciated!

Anonymous said...

Great job! Very clear and concise. You condensed alot of information into 1 page. I like the way you used questions and answers to communicate the info.
And I agree with the comment about the ending - a donation button. I thought you handled very well so many things most people don't understand.
Thanks for taking the time and energy to do this.

learning to live said...

I left the previous post but fogot to mention how much I like your title and description Cinder.
Also I didn't mean to be anonymous.ardendll

Anonymous said...

Thank you for this my dear! Judy

vw said...

Brilliant, just brilliant! X

Creek said...

Such a well-organized FAQ. And with a donation button too! Who could resist pressing that shiny button? Great ideas, well presented.

Laurel said...

Thanks for this informative post on XMRV, Susan. Well done!

cinderkeys said...

Thanks. :)

I'm both gratified and amused at how many people have remarked upon the donation button. Nice to know my Photoshop purchase hasn't gone to waste. ;)

Tina Tidmore said...

I thought this one was great. I missed the donate button. I will go check it out.

jace said...

Brilliant blog, Cinders. I've bookmarked Cinder Bridge to send to folk who don't know about the subject yet. I think you are a genius xx

The Resistance said...

Excellent work Cinders, lets spread the XMRV word out there x