Whittemore Peterson Institute XMRV research and Fibromyalgia Syndrome

Earlier this month, scientists from the Whittemore Peterson Institute (WPI) in the US announced that they have discovered a retroviral link to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

They recently published their groundbreaking findings in the journal Science and the paper, entitled “Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients,” is a major breakthrough in understanding the origins of this disease, which has some similarities to Fibromyalgia Syndrome (Fibro).

The initial research showed that 67% of the ME/CFS patient samples tested positive for the retrovirus XMRV. Further work has found that 95% tested positive.

This discovery proves a significant correlation between this serious retrovirus and these diseases. However, this does not mean that the answers to ME/CFS are there. The researchers have noted that:

"Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it."

XMRV has also been linked to other conditions, including forms of cancer, and the WPI found that it can be present in people who do not have ME/CFS at all. If XMRV is later on found to be a cause of ME/CFS, it may only be the cause for a subset of people currently diagnosed with ME, ME/CFS or CFS. Some people with a current ME/CFS diagnosis may have been mis-diagnosed or there may be yet more causes of ME/CFS to be discovered.

A lot of excitement has been generated in Fibro patient communities around the world by the inclusion of Fibro in the research. However, this excitement is definitely premature.

The WPI researchers have themselves noted that:

"A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia."

We would like to remind Fibro patients that although the symptoms of Fibro and ME/CFS can overlap by up to around 60%, there are also sigificant differences between the two conditions.

A large amount of research has been done into Fibromyalgia Syndrome and it is far better understood than ME/CFS has been. A number of treatment options have been researched and proven effective for Fibro. Although research continues into how to make treatment programs more effective for even more patients, and patients often struggle to access or maintain effective treatment, this does not mean that the research does not exist and that treatment options are not out there.

It is however possible to have both Fibro and ME/CFS and the WPI's research may one day help us to understand how this happens.

What is XMRV?

XMRV is a human retrovirus and is similar to HIV and HTLV-1. It was first identified by Dr. Robert Silverman, in prostate cancer tissue of men with a specific genetic defect in their antiviral defense pathway. Prior to the Whittemore Peterson Institute study, XMRV had not been isolated from a human diseased population or been shown to be infectious and transmissible.

If you have XMRV, what can be done?

At this time, not a lot.

Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects.

There is currently no cure for known human retroviruses, such as HIV and HTLV-1.

For more information on the XMRV research, see the Whittemore Peterson Institute website.