The article, Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome, published in Science Express on October 8, 2009 send a shockwave through the ME/CFS-community. But how many of the ME/CFS patient samples tested positive for the XMRV retrovirus? Was it 67%, 95%, 98%, or 100%?
67% – 3.7%
At the time of writing this post, the above mentioned article was the only publication in a respected scientific magazine on the link between the retrovirus XMRV and ME/CFS. The initial research showed that 67% of the CFS patient samples tested positive for XMRV, compared to only 3.7% of samples of healthy individuals. The original article doesn’t reveal the selection criteria for the patients and it only mentions Chronic Fatigue Syndrome (CFS). The website of the Whittemore Peterson Institute also mentions Myalgic Encephalomyelitis (ME), Atypical Multiple Sclerosis (MS), Fibromyalgia (FM), and Gulf War Syndrome.
A more recent study at the Whittemore Peterson Institute found that more than 95% of the over 200 patients with ME/CFS, FM and Atypical MS are infected with XMRV. They haven’t published any details on this new research yet, nor do they mention the percentage of healthy people infected with XMRV according to this new test.
When I read this, my first reaction was disbelief. Can a heterogeneous disease like ME/CFS really be linked to one retroviral infection? My second thought was that they must have targeted a specifically selected group of ME/CFS patients and not just some randomly picked individuals. If this is the case, what where the selection criteria? Were all the blood and tissue samples from the repository of Dr. Daniel Peterson? From the Lake Tahoe outbreak? Dr. Judy Mikovits from WPI already told that she used Peterson’s repository for finding the retrovirus.
98% – 6-7%
I have found these numbers in articles and on blogs, 98% of CFS patients and 6-7% of healthy people infected with XMRV, but I couldn’t link this to a scientific article or to the Whittemore Peterson Institute. Probably a journalist or blogger who made a typo which got copied by others, at least for the 6-7% infection rate of healthy people. The 98% figure did appear in an article on the website of the New York Times on October 12, 2009: ‘Is a Virus the Cause of Fatigue Syndrome?‘ by Denise Grady. She already had the name of the disease wrong for starters.
In an opinion article in the New York Times, Hillary Johnson writes about an interview with Dr. Judy Mikovits.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
Are we still discussing ME/CFS in general here, or the samples from Daniel Peterson’s repository and the Lake Tahoe outbreak? Did they focus on all Dan Peterson’s ME/CFS patients or just on those who were suffering from rare lymphomas and leukemias? Was altered RNase L activity a selection criterium? Is research based on a ME/CFS outbreak also valid for individual ME/CFS sufferers?
Anyway stating that the positivity rate will be close 100% at this stage of research is pure speculation and outside the realm of science.
It is an exciting time and as other institutes and researchers rise to challenge and I hope we can expect some answers to these questions in the very near future. Whether the findings of WPI get confirmed, or not. This may sound harsh, but at this moment all articles on cause, treatment, cure, and vindication (finally getting rid of the between-the-ears gang) are a hype.
I don’t care about political correctness. At this moment it is neither intellectually, nor scientifically, nor medically correct to state that XMRV causes ME/CFS. They might have found a possible link. That is fine by me. I can live with that … for now. Studies in Germany and Ireland were unable to link XMRV to prostate cancers. Know that it was the discovery of XMRV in a subset of prostate cancer patients that prompted WPI to test whether the retrovirus might be associated with CFS.
I am fully aware that this article may become outdated very soon.
- ‘Xplained’ by Suzanne D. Vernon, PhD, Scientific Director, The CFIDS Association of America, link.
- Whittemore Peterson Institute for Neuro Immune Disease, link.
- ‘Is a Virus the Cause of Fatigue Syndrome? ‘ by Denise Grady, New York Times (October 12, 2009), link.
- ‘A Case of Chronic Denial’ by Hillary Johnson, New York Times (October 20, 2009), link.
- ‘Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome’, Science Express (abstract), link.
- ‘Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome’ and more news, Whittemore Peterson Institute (full article), link.
- ‘The Fog of War’ by Hillary Johnson, Osler’s Web, link.
- ‘XMRV not detected in German prostate cancer’ by Vincent Racaniello, Virology blog, link.
|May you live in interesting times|