The topic of XMRV and its possible link to chronic fatigue syndrome has been appearing in the news again. The media interest stems from multiple recent studies that appear to be coming to different conclusions on whether or not the XMRV-CFS linkage is there.
In a study published earlier this month in Retrovirology, CDC researchers reported the absence of XMRV in the study’s CFS patients and its control group. Another study whose publication has been temporarily blocked by the FDA and NIH contradicts this, finding that XMRV is often present in the blood of CFS patients.
I have been following this closely. It is, unfortunately, a very highly charged topic that misses the undercurrents of what is really happening. We have a medical system that still has some "Flat Earth" advocates ― those who are trying to make believe CFS and fibromyalgia are not real illnesses. As has occurred in the past with many illnesses that afflict women more than men, and where a diagnostic lab test did not exist early in its exploration, some physicians tried to make believe the patient was simply crazy. This happened with multiple sclerosis (called by some "hysterical paralysis"), rheumatoid arthritis and more recently lupus. Now it is CFS and fibromyalgia patients’ turn to suffer.
The source of the problem can even be seen in the medical term "hysteria," which is derived from the word "hystero," meaning uterus. If you are a woman, and the doctor doesn't know what's wrong with you, you're crazy.
Attempting to invalidate this disabling and severe illness offers the busy physician an excuse to be lazy, which is easier than taking the time to properly learn about and care for patients with a complex illness — especially when insurance companies often will not pay for spending the needed time. It also allows an excuse for insurance companies (health and disability) to avoid paying patients billions of dollars due to them. Unfortunately, these "benefits" come at horrific costs to the patients' health.
The Simple Reality
- CFS and fibromyalgia are clearly very real and devastating physical conditions. This was proven in our published placebo controlled study which showed that an integrated treatment protocol helped 91% of patients with an average 90% increase in quality of life. As the patients receiving placebo showed minimal improvement, while the active treatment patients showed dramatic improvement, this is clearly a real and physical illness.
We have effectively used the "SHINE Protocol" (Sleep, Hormonal support, Infections, Nutritional support, and Exercise as able) in over 15,000 patients at the Fibromyalgia and Fatigue Centers nationally. This protocol is offered by over 1,000 physicians nationwide as well.
- These syndromes include immune dysfunction, and many different infections are more common in CFS/FMS than in the healthy population, just as in other immune suppressed conditions such as AIDS. Basically, patients pick up many infectious "hitch hikers" because of the immune dysfunction. Some infections need to be treated, but most resolve as the immune system heals by treating the CFS/FMS itself.
- Given the controversy and implications, it is reasonable for the government (in this case the NIH and FDA) to take a bit of time to review both the positive and negative studies before release, though this is understandably very frustrating for patients. Unfortunately, the NIH and CDC have generated enormous (and I suspect often well deserved) mistrust in the CFS/FMS community. The question is whether the study review will be fair and honest, or if the data will be buried to protect insurance company profits. Unfortunately, since they have now quickly released the "XMRV negative" study for publication and are still holding back the "XMRV positive" study, it is again leaving many with CFS feeling like the government is ready to throw them under the bus again. It would have made more sense to have waited until the review was complete and then release both studies simultaneously.
I would note that although I have found the individual researchers at the NIH and CDC to be good and well-meaning individuals, the cultures in both seem to discourage research that suggests CFS/FMS are anything but psychological illnesses. In fact, I suspect that a researcher showing these to be the real diseases they are might find their career growth at these agencies to be effectively over. The XMRV study was done by Dr. Harvey Alter, the highly-experienced Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. Being a researcher in blood bank safety, he seemed unaware of this political undercurrent, which may sadly now come back and drown him.
- The "absence of evidence" for XMRV in some studies does not mean "evidence of absence." It simply means most labs do not know how to properly test for the virus. As I have blogged earlier, this could simply be controlled by the studies also sending blinded samples to the WPI (which did the initial positive study) ― half of the samples from CFS patients and half from healthy patients. If they can tell one group from the other in a statistically and clinically significant way, then we will have a clear answer. It is actually quite simple. Except for the politics.
Love and blessings,
Jacob Teitelbaum M.D.