The CDC’s long awaited XMRV study has finally be released. The abstract of the study can be found here: http://www.retrovirology.com/content/7/1/57 and the full 41 page study can be found here: http://www.retrovirology.com/content/pdf/1742-4690-7-57.pdf
The CDC study was started not long after the 9th of October 2009 when the Lombardi-Mikovits study was released. The CDC study was completed before February the 1st 2010.
As the Wall Street Journal (WSJ) and CFS Central (http://www.cfscentral.com) reported correctly (several days ago), the CDC failed to find XMRV in the blood of the CFS cohort or the healthy control group. I have only had a chance to skim read the CDC study but already I can say that they used very dubious techniques with a dubious cohort leading to their flawed study. Some of the methodological flaws of the CDC study include the ones I anticipated they would make and I wrote about in this article: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/06/30/xmrv-publications-by-fdanih-and-cdc-both-on-hold/
Essentially the CDC study involved looking for XMRV without using the techniques needed to find XMRV. They searched for XMRV in a cohort that didn’t consist of CFS patients yet they labelled the cohort ‘CFS patients.’ If the CDC used a similar study methodology to look for ‘lung cancer in smokers,’ it would look like this. 1. Gather a group of non-smokers than have never smoked in their life and call them smokers. 2. Following this, look at their feet for lung cancer. If an identical methodology to the CDC’s XMRV study was applied to this hypothetical ‘lung cancer-smoking study,’ the conclusion would be that smoking doesn’t cause lung cancer, in fact nothing causes lung cancer.
The FDA/NIH XMRV Study
According to the CFIDS Association of America’s Facebook page, found here: http://www.facebook.com/CFIDSAssn Dr Harvey Alter, the lead author of the FDA/NIH study said “Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy”
If this statement is correct and indeed referring to the NIH/FDA XMRV study that found XMRV, then several questions are raised. The WSJ reported that the government had put BOTH the CDC and FDA/NIH study on hold from being published. The WSJ were correct in their details of the contents of the CDC study and saw an email between insider scientists. The WSJ article also quotes prominent figures that have an insider’s view on the situation. These comments by ‘prominent figures’ supported the WSJ article’s conclusion that both the FDA/NIH and CDC studies would be put on hold.
According to a press release by ORTHO (found here: http://www.mmdnewswire.com/xmrv-9040.html) Dr Alter confirmed that an NIH/FDA XMRV paper was to be published. It is reasonable to assume that for Dr Alter to confirm this, the paper would have been accepted for publication. This directly contradicts his statement from the CFIDS Facebook page that “Our paper has not yet been accepted for publication.”
Sorting Out the Contradictions
The CDC paper was completed by February 2010 and not published for 5months (until today.) It was released 2 days after the WSJ exposed the CDC study vs FDA/NIH study contradictory results. The CDC study was released 2 days after the WSJ reported on both studies being held back. This backpedal on publishing the CDC paper and then release of the CDC paper doesn’t seem like a temporal coincidence.
The government most likely originally planned on delaying both papers. When this information leaked into the public domain through the means of the WSJ, the government most likely rethought this strategy. The question then arises as to why did the government approve the CDC study being published and ask the FDA/NIH study authors to conduct additional experiments to confirm their results? To answer this question it is necessary to examine the situation from the government’s point-of-view.
The Options the Government Had
The government had several options once the information of them delaying both papers reached the public domain.
Option 1: The government could have let things be (persisted with not releasing either paper) and let the scientists sort things out behind closed doors to determine the correct study
Negatives to option 1: The government would have been (and indeed was) accused of biasing science and letting politics potentially dictate scientific results. The government would have also been accused of being unscientific by deciding science in the private domain, behind closed doors. This would have caused an outrage (and in fact did) among the scientific community. These reasons seem sufficient for the government to abort this option once it became public knowledge, thanks to the WSJ article.
Option 2: The government could have released the FDA/NIH study and held the CDC study up.
Negatives to option 2: The government probably still isn’t 100% sure what role XMRV plays in human disease nor the prevalence rate of XMRV infection. If it released the positive FDA/NIH study now it would need measures in place to test the public with a reliable XMRV test. It would also need knowledge on XMRV such as mode of transmission, which it currently doesn’t have. These reasons seem sufficient reasons from the government’s point of view to abandon this option.
Option 3: The government could have released both the FDA/NIH and CDC studies.
Negatives to option 3: After already ruling this option out according to the WSJ, it would seem unlikely for the government to backpedal and release both studies. The government would be sending a weak message out to the public in finding contradictory scientific results. The government would also not be sure where to stand on XMRV issues officially.
Option 4: The government could have released the CDC study but held back the FDA/NIH study.
Consequences to option 4: Through this option, the government would have bought more time to fully explore the XMRV threat. They could work out any ambiguities regarding all aspects of XMRV and could determine an official government stance on XMRV. They couldn’t be accused of doing science in the private arena as they released the CDC study. Their official stance would be that ‘the evidence suggests that XMRV doesn’t cause disease.’ This official stance could always change in the future months if the additional experiments performed by Alter et al determined their FDA/NIH study to be correct.
From the government’s point-of-view, it is easy to see why they chose ‘option 4.’ If XMRV does turn out to be disease causing, they would have bought more time to develop measures to prepare for the threat. If XMRV doesn’t turn out to be disease causing, they would have released the “right” study that didn’t find XMRV.
The above options and consequences are all hypothetical and what I imagine the government’s thought process would be like concerning XMRV. The thought process is in no way what I think the government should have done.
As I write this there is a level of confusion among the CFS patient community, as the CDC study was only released an hour ago. Hopefully comments will be made by some organisation to clarify the seemingly contradictory state-of-affairs at present. At the moment it seems the FDA/NIH study is still on hold and Dr. Alter has been told to conduct further experiments to support the FDA/NIH study. The fundamentally flawed CDC study should be the study having additional experiments performed to prove its validity. For CFS patients this is déjà vu of 20 years ago- dealing with the Centre for Disease Control that is not concerned with ‘disease control.’ This time however, the globalisation of the world through mediums such as the internet mean we are not individual CFS patients but a group united. Individually we are just timid souls searching for truth yet standing together we are a force to be reckoned with that will expose the truth.