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
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.
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.
Love and blessings,
Jacob Teitelbaum M.D.