Some days remain etched in our memories for a lifetime. Today is one of those days.
On October the 9th 2009, a small laboratory called the Whittemore Peterson Institute (WPI) made big news by announcing the presence of an infectious retrovirus, XMRV, in Chronic Fatigue Syndrome patients. They found XMRV in 67% of CFS patients (later on in > 95% of CFS patients.) This was opposed to just 3.7% of healthy controls being infected with XMRV. Since October the 9th 2009, the CFS community has waited for a day like today.
The FDA/NIH confirmation
Two Dutch journalists from the magazine “ORTHO” obtained a lecture given by the National Institute of Health’s Dr Harvey Alter. Dr Alter gave this lecture at a Blood Transfusion Workshop held in Zagreb on May the 26th and 27th 2010. As part of the lecture document obtained by the Dutch journalists, Dr Alter allegedly claims that his institute, the National Institute of Health (NIH) and the Food and Drug Administration (FDA) “independently confirmed” the Mikovits-Lomardi study headed by the WPI. Dr Alter’s lecture also allegedly estimated XMRV and other Murine Leukemia viruses to be within the donor supply at between 3% and 7%. The original press release can be found here: http://www.mmdnewswire.com/xmrv-9040.html
After 9 months of failed validation studies (performed using flawed methodologies) the FDA/NIH study, if true, is a hugely significant study with potentially serious worldwide repercussions that are difficult to fathom. Dr Alter reportedly estimates between 3% and 7% of the donor supply to be infected with XMRV and other Murine Leukemia viruses (MLV). Assuming a homogenous distribution worldwide, this translates to between 200 million and 470 million people infected. With potentially this number of people potentially at risk of CFS, fibromyalgia, atypical MS, autism, prostate cancer and possibly a range of other illnesses, a huge amount of fear may be generated. The vast number of people potentially infected means that money will most likely be thrown at XMRV research.
In hindsight, the reported findings of the FDA and NIH fit in neatly with a lot of rumours and actions of late. There have been rumours recently stating that a positive XMRV study was about to be released. Also, the author of Osler’s Web, Hillary Johnson, wrote on her website today that in the last few weeks, 2 researcher-scientists have contacted her, advising her that a major XMRV study was to be released confirming the Mikovits-Lombardi paper. Hillary Johnson’s views on the reported FDA/NIH study can be found here: http://www.oslersweb.com/ On June the 18th 2010 the American Association of Blood Banks (AABB) issued a press release discouraging those with CFS or those who had recovered from CFS from donating blood. This was 9 months after the original Mikovits-Lombardi paper and despite only negative validation studies being released. In hindsight, the CFS donor deferral ties in neatly with the reported findings of the FDA and NIH. Last week on the “CFS central” website, it was reported that a government official revealed that a government agency had found XMRV although the CDC hadn’t. This can be read here: http://www.cfscentral.com/2010/06/blood-feud-part-2.html
The implications (if the CDC couldn’t find XMRV) explain why they have spent such a significant amount of time delaying the release of their study, ie the contradiction of another government agency finding XMRV. It is also infuriating to consider that the CDC were the group that failed to find the Elaine DeFreitas retrovirus all those years ago. I direct this quote originally by John Maynard Keynes towards the CDC, “When the facts change, I change my mind. What do you do, sir?”
I am still cautious about the CFS to XMRV link for several reasons. Firstly, despite the leaking of Dr Alter’s lecture in Zagreb, I’d like to see the study itself. The leaking and subsequent comments are very promising but the way science works is on studies being released. I’d hate for the study to not be released for whatever reason. Although having said that, Dr Alter has confirmed that a study is soon to be published. Dr Alter also in his lecture praised the Mikovits-Lombardi study saying it was strong and likely true but causality between XMRV and CFS has not yet been proven. This is an important point as correlation doesn’t necessary equal causation and more studies are needed to determine this. I am also slightly cautious about another comment from Dr Alter, stating that “XMRV and related MLVs are in the donor supply.” This probably has to do with the finer details of the FDA/NIH study however the fact that he qualifies XMRV with MLVs raises several questions. Most likely the study, when released will explain the testing methodologies and reveal if XMRV specifically or MLVs in general were tested for.
Today is a historic day for CFS patients, just as October the 9th 2009 was. The CFS community now must wait on the FDA/NIH study being released. Also the actions of the CDC regarding XMRV in general and their study are eagerly awaited. Franz Kafka’s words of “There is hope, But not for us” have long been typical of CFS patients and their plight. Today marks the day that it is appropriate to paraphrase and negate part of Kafka’s quote, leaving us with- “There is hope for us.”