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As we have been following in blog and newsletter articles, 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 both fascinating and at times a bit disgusting 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.
A well-done study out of the FDA and NIH has finally been published. 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 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 had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, 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 financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.
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 are both risky and expensive, and so far not dramatically helpful, so I do not recommend your being the guinea pig to try them.
Even so, it may well be one more problem that helps drag you down. We have found that treating with the "SHINE Protocol" helps most people to improve (see our study showing an average 90% improvement). 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) is not prohibitive, and you have family or doctors treating you like you're nuts, it may be worth it. Also, if you are in litigation with an insurance company it may help. Do the entire panel to avoid a false negative test. It will not affect treatment though at this time, so it is not critical to do. For more on the pros and cons of testing, read some of the XMRV testing and treatment experiences shared by members of our EndFatigue discussion board.
How does this help now?
This is one more potent confirmation that the illness is a real and physical disease. This has been obvious for a long time, but insurance companies and doctors could still be idiots and ignore the science. The media attention to this new study, and it being an NIH/FDA/Harvard study, will make it harder for nitwits to still make believe this is all in your mind. 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!
For More Information
The new study: "Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors"
Nice article by Mindy Kitei: "The FDA/NIH/Harvard 'XMRV' Study: The Same Thing, Only Different"
FDA Press Release: "Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients"
