ME/CFS, XMRV, XAND, etc

Many of you will already know this, but for those that don’t, in October there was a tremendous hullabaloo in the ME/CFS world, and there still is. The best kind of hullabaloo.

This is because of research conducted by the Whittemore Peterson Institute and published in the journal ‘Science’: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.

The WPI studies neuro-immune disease, has reputable researchers on board, and has achieved amazing things in a short time. Their study found a potential link between ME/CFS and a retrovirus called XMRV. As the Director of Research for the WPI, Dr Judy Mikovits said in the press release:

“We now have evidence that a retrovirus named XMRV is frequently present in the blood of patients with CFS. This discovery could be a major step in the discovery of vital treatment options for millions of patients."

Although it’s not yet clear if it’s an issue of causation or correlation (an important differentiation), many of the well-regarded names in the ME/CFS world are making big calls about the importance of the discovery. I’ve never, ever seen a response like this, and that in itself is exciting. It’s also garnered plenty of attention in the mainstream media.

There is a Q&A on the Whittemore Peterson site and I recommend reading it so you get the info straight from the horse’s mouth.

Hillary Johnson has also written about it in her inimitable style in an excellent article, ‘A Case of Chronic Denial’ in the New York Times. She is also reporting on XMRV on her fabulous blog.

As for the WPI itself, there’s a recent article by Denise Grady in the New York Times, ‘A Big Splash from an Upstart Medical Centre’, and a 2008 article by Cort Johnson describes how the WPI got off the ground.

If you’re interested in further reading, there are many links in my shared google reader items tagged with XMRV. Scroll through and see what catches your eye, or subscribe to the XMRV feed. There is an overwhelming amount of discussion out there. I’ve kept to the basics in this post, but I’ll be adding fresh links from the spectrum of opinion to that list of shared items as I come across them. All the shared items automatically pop up in the sidebar on the right.

Here are some interesting quotes on the matter:

Dr David Bell, in the Lyndonville News:

“But most of all I want to predict where this is going. I am using the "force" here. I have no special or inside information from the Whittemore-Peterson Institute. They have to be cautious and circumspect. I don't. I am an old man sitting on my porch rocking chair, desperately trying to retire; I will say what I think is true.

“…the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.

The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science.

“…I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now.”

Dr Nancy Klimas:

“It’s important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms. The good news is that if XMRV is linked to CFS, there are many antiviral drugs that have already been safety tested in HIV. that may inhibit viral replication. So those studies could be designed very rapidly.”

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Dr Dan Peterson:

Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines. I’m excited about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatment options.

“X Associated Neuro-immune Disease, or XAND - a new disease entity encompassing ME/CFS - will require additional research funding to find effective treatments.”

Dr Paul Cheney:

“The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection. This novel retrovirus could easily shift the redox state just like HIV as has been published in (2001) and (1995) and induce all manner of associated pathogens as seen in CFS. A redox shift could ultimately corrupt the gut ecology and create P450 decoupling based on NADPH depletion observed in CFS and lead to environmental illness as well. Time will tell but I think Dr. Mikovits is right to suspect causality.”

Dr Byron Hyde:

“Dr Peterson, probably one of the nicest and learned colleagues in the field of CFS, recently from the brand new, just opened, multi-million dollar Whittemore Peterson Institute in Reno Nevada, announced overwhelming evidence that the cause of M.E. or CFS, is XMRV retrovirus. The XMRV mouse retrovirus occurred in 68% of the CFS patient’s blood samples and only 4% of non-CFS patients. Pretty convincing!

This retrovirus theory comes with a history: It was first raised as a possibility by the gay community at a symposium I attended in San Francisco in 1987 and again by Florida based researcher Dr DeFreitas in the early 1990s. Dr DeFreitas discussed this retrovirus theory in our textbook, ‘The Clinical and Scientific Basis of ME/CFS’.

At the very least, this retrovirus discovery is great free advertising for the Whittemore Peterson Institute. It will possibly bring them in many millions of dollars from, patients willing to be separated from their assets, generous charities and governments before the retrovirus theory is once again thrown into the garbage bin. I should add that incubation period of XMRV is up to 21 days which makes it impossible to cause an epidemic illness. One theory to explain this “new” finding is that XMRV is a mouse virus and since many research institutes have tens of thousands of mice, cross contamination of specimens are inevitable.”

And now for some video interviews. Here's parts 1 and 2 of an interview with Judy Mikovits and Annette Whittemore. I just love how genuinely thrilled the interviewer is.

And Dr Nancy Klimas:

There’s much I’d like to say on this, and I will, but I’ll leave it there for now.

Until next time, comrades.