As we have been following in my blog, there have been many conflicting studies and a large amount of controversy over the initial study on XMRV virus and chronic fatigue syndrome. Several studies did not find the virus and raised questions about the initial study. Meanwhile, it was fascinating to see the politics involved in the controversy.
With an exciting new study released this week, I am now comfortable that the question of whether XMRV (and related viruses) is present in CFS patients has been largely settled.
The well-done study out of the FDA and NIH has finally been published (“Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors,” published this week in the Proceedings of the National Academy of Sciences).
Though the politics and controversy around the topic initially caused the study's publication to be held up, and subjected to even more detailed scientific review and scrutiny, it was worth the wait.
The study showed that evidence of XMRV virus (and related viruses called "MLV") was present in 86.5% of CFS patients vs. less than 7% of healthy controls. This is a dramatic difference and corroborates the earlier WPI study. I was also very pleased to see that Dr. Anthony Komaroff was one of the study authors.
Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?
- The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won't find it. Not finding it doesn't mean it's not there.
- The researchers were unrelated to the WPI researchers and so provided a completely independent perspective. I consider the WPI folks to be excellent, but independent verification and confirmation still adds a lot.
- That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not "too sensitive." A second form of confirmatory testing was also done to confirm positive results.
This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any potential financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing.
So What Does All This Mean?
Does this mean XMRV is causing CFS?
Not necessarily. Because so many infections have been documented in CFS, it could simply be a reflection of an immune dysfunction, and not the cause.
Might treatment help?
There is no proven treatment for this virus yet, but there are many promising candidates. These treatments have significant side effects and are expensive, and so far have not been demonstrated to be dramatically helpful, so I am not recommending them at this time. Studies on different antiviral mixes are being planned, and hopefully will offer new future treatments. But for now the risks outweigh the benefits.
Even so, XMRV and related viruses may well be one more problem that helps drag you down. The good news is that overall treatments that support immune function will likely often help keep these viruses in check. This is supported by our research that shows that treating CFS patients with the "SHINE Protocol" (Sleep, Hormonal support, Infections, Nutritional support, and Exercise as able) helps 91% of those suffering with the illness to improve by an average of 90% (shown in a research study I led on effective treatment of CFIDS and fibromyalgia that was published in The Journal of Chronic Fatigue Syndrome, Vol. 8(2) 2001). This suggests that simply supporting your immune function with SHINE may often be enough. Nonetheless, we still don't have a cure for everyone. So this offers important hope.
Should I be tested?
It depends. If the cost (about $650 last I checked — and I suspect often not yet covered by health insurance) is not prohibitive, and you need more documentation to help prove that you have the illness, then it may be worth it. Do the entire panel to avoid a false negative test. It will not affect treatment though at this time, so the testing is not critical to do.
How does this help now?
This is one more potent confirmation that the illness is a real and physical disease, and it should help convince some of those who remain skeptical in the medical community. The media attention to this new study, and it being an NIH/FDA/Harvard study, will also add to its credibility. For perspective, doctors used to call Multiple Sclerosis "hysterical paralysis" and told women with lupus and rheumatoid arthritis that they were just hysterical — until new testing confirming the illnesses became available and changed everything.
This is what is happening now for CFS and fibromyalgia.
All in all, a very good day!