Three years ago I wrote about an experimental treatment for chronic fatigue syndrome (CFS): rituximab (brand name Rituxan). I was concerned that doctors who offered it, like Andreas Kogelnik, were jumping the gun by offering it before the evidence was in, and that they might be putting patients at risk.
A correspondent who has been following the CFS forums asked me to revisit this issue. She sent me links to forum posts indicating that Dr. Kogelnik is treating CFS patients with the drug, that they are not being enrolled in clinical trials, that information about results is not available, and that at least one patient may have developed a life-threatening side effect. I want to stress that I don’t have any evidence that those statements are true. These are only posts on a forum, and I have no way to verify the information. I tried to get more information from Dr. Kogelnik’s clinic, but was unsuccessful. Nevertheless, even if everything in those forum posts is false, I think the issue is serious enough to bring it to the attention of the public again. My purpose is to provide accurate information about rituximab and to get people to think about the principles involved, not to make claims or accusations or cast any blame. (more…)
Chronic fatigue syndrome (CFS) is a controversial diagnosis that has also been called myalgic encephalomyelitis (ME or ME/CFS), post-viral fatigue syndrome (PVS), chronic fatigue immune dysfunction syndrome (CFIDS), Iceland disease, “yuppie flu,” and many other names. A new report from the Institute of Medicine (IOM) says that none of those names really fit the disease and recommends it be re-named systemic exertion intolerance disease or SEID.
ME/CFS is thought to affect as many as 2.5 million Americans. The cause remains unknown, but in many cases it appears to have been “triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy meals, and rarely blood transfusions.” Some doctors question its very existence and interpret the symptoms as imaginary or psychological.
The IOM examines the evidence base
At the request of several government agencies including the NIH and the FDA, the IOM convened a committee of 15 experts to examine the evidence base for ME/CFS. They reviewed over 9,000 published studies and heard testimony from patients and advocates. Before publication, an additional 15 experts were asked to provide peer review. The full text of the report is available free online. (more…)
A mouse leukemia retrovirus, xenotropic murine leukemia virus-related virus (XMRV retrovirus), has been under consideration as a possible cause of chronic fatigue syndrome (CFS, and also prostate cancer). In a study published in Science in October 2009, Lombardi et al. found XMRV in 67% of CFS patients and 3.7% of controls. Several subsequent studies in the UK, the Netherlands, and the US — by lead authors Erlwein, van Kuppleveld, Groom , Switzer and Henrich — failed to find XMRV at all.
Now a new study published in Retrovirology by Hue et al. shows that the original positive findings were likely erroneous and due to contamination in the lab. The complete article is available online.
We provide several independent lines of evidence that XMRV detected by sensitive PCR methods in patient samples is the likely result of PCR contamination with mouse DNA and that the described clones of XMRV arose from the tumour cell line 22Rv1, which was probably infected with XMRV during xenografting in mice. We propose that XMRV might not be a genuine human pathogen.
When I first heard that a retrovirus had been identified as a possible cause of chronic fatigue syndrome, I withheld judgment and awaited further developments. When I heard that two subsequent studies had failed to replicate the findings of the first, I assumed that the first had been a false alarm and would be disregarded. Not so.
It’s a classic case of wishful thinking outweighing good judgment. One unconfirmed report of an association between the XMRV virus and chronic fatigue syndrome (CFS) resulted in a rush to test for the virus, speculation about possible implications, and even suggestions for treatment. And the subsequent negative studies did little or nothing to reverse the trend.
XMRV is Xenotropic murine leukemia virus-related virus. In the past, there were reports that this retrovirus was associated with prostate cancer, but then other reports found no link. In 2009 a study was published in Science, “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” by Lombardi et al., reporting an association with CFS:
we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. (more…)