07 July 2010

The Echos of Silencing Science

Science is beginning to verify the fact that my body isn't so well.  That my DNA, and that of a couple of my family members, is possibly ravaged by a retrovirus.  Politics is telling me that I needn't waste my time on such nonsense, and that this isn't an issue I should dwell upon.

On 06 July, a blog entry titled FDA/NIH Paper in Limbo; Patients Unite, authored by freelance science reporter Mindy Kitei on her blogsite CFS Central, (see link on right of screen), is published, suggesting that the NIH/FDA paper was in fact halted by high level government officials in the Department of Health and Human Services (Kitei, M., 2010).

Kitei. M., (2010), reports that Dr Steve Monroe of the High Consequence Pathogens and Pathology at the CDC stated that "When CDC, FDA, and NIH learned that separate studies had been conducted with differing results, a collective decision was made to try and account for these differences.”.  Marcus, A. D., (2010) reported similarly on the halted papers, quoting editor-in-chief Kuan-Teh Jeang, of the journal Retrovirology, as saying "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," (Marcus, A. D., 2010).  

Since then, however, it hes been reported by Kitei. M., (2010), that the CDC is responsible for halting the NIH/FDA Paper.   'Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study.' Kitei. M., (2010).  Kitei. M., (2010) goes on to state that the FDA/NIH paper was in final proofs when it was halted.

This, no doubt, will cause much angst among the ME/CFS community of patients and advocates, as it had been leaked that the FDA/NIH paper had found a positive correlation between ME/CFS and XMRV, and further addressed the issue of public blood supply infection.  The positive findings of the NIH/FDA paper will be some of the first which verify the findings of the Whittemore Peterson Institute.

I'm not sure about anyone else, but I prefer the sound of science, to politics.

References:

Kitei. M., (2010).  FDA/NIH Paper in Limbo; Patients Unite. Retrieved 08 July 2010 from http://www.cfscentral.com/2010/07/fdanih-paper-in-limbo-patients-unite.html

Marcus, A D., (2010). Chronic Fatigue Link To Virus Disputed. Retrieved 05 July from http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

Marcus, A D., (2010).  CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out.   Retrieved 05 July from http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

05 July 2010

Science vs Silence

The previous blog entry, dated 25 June, discussed a press release which indicated that a research team, headed by a Harvey Alter, a medical researcher, virologist, physician, and chief of the infectious disease centre at the National Institute of Health, had submitted for publication the results of a study into the incidence of XMRV in blood samples taken from individuals with ME/CFS.  Dr Alter reportedly stated that the findings of this study, to be published in the journal Proceedings of the National Academy of Sciences of the USA (PNAS), reinforced the findings of the Whittmore Peterson Institute in identifying the Gammaretrovirus XMRV in blood samples of individuals with ME/CFS. For further detail about this release, refer to the previous blog entry.

Five days later, on 30 June, it was reported in several publications that the Centers for Disease Control had also completed a study into the incidence of XMRV in ME/CFS.  Their results, however, failed to find XMRV in blood samples taken from individuals with 'Chronic Fatigue Syndrome'.  Two different government agencies; two different results. So each publication, respectively, went on hold.

Ashley Truxon, media coordinator for the journal Proceedings of the National Academy of Sciences of the United States of America, (PNAS), stated that the paper submitted for publication by the FDA/NIH had been placed on hold, with no further comment (Marcus, A. D., 2010).  Meanwhile, editor-in-chief Kuan-Teh Jeang, of the journal Retrovirology, stated that the paper submitted by the CDC had been through the peer-review process, and had been accepted for publication, however, Dr. Jeang received a call from the authors of the paper, requesting be held.  "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said (Marcus, A. D., 2010).  

In the process of scientific discovery, publication of scientific results is an integral part of the scientific method.  To be published, a paper must endure significant peer review, and provide substantial detail enabling the research to be repeated by independent researchers.  The pursuit of scientific inquiry requires that research submitted for publication by a journal meets rigorous criteria, in order for it to be published, and a part of scientific record.  As such, although it isn't unheard of for submissions to be halted after the peer-review process, it is highly unusual.

24 hours later, on 01 July, and the journal Retrovirology goes ahead with it's publishing of the Switzer, W. M., et al paper, 'Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States'.  A discussion of this paper will be attempted in a future blog entry. 

Meanwhile, we are left wondering what happened to the NIH/FDA paper.  Kaiser. J., (2010) reports that the authors of the PNAS paper have decided it needs more work. NIH spokesperson John Burklow explained to Insider that the paper had been accepted by the journal PNAS, but Alter and his co-authors decided to "pull it back" and revise it in response to questions raised by reviewers (Kaiser. J., 2010).  Harvey Alter of the NIH Clinical Center, Stated on 30 June "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."

As of the printing of this blog entry, the NIH/FDA paper has yet to be published.

Again, a future blog entry will discuss the paper published by the CDC in the journal Retrovirology, however, in the meantime, I have included a link to a statement made by the Whittemore Peterson Institute in response to the reported findings.  I have also added a link to a discussion written by Andrea Martell, of the Blue Ribbon Campaign for ME.  Also included is a link to the facebook page, XMRV Press releases.

Links:

Science and Consensus, by Andrea Martell

WPI Statement regarding CDC study


XMRV Press Releases facebook page

References:

Kaiser. J., (2010).  UPDATE: Journal Publishes CDC Paper Failing to Find Viral Link With Chronic Fatigue Syndrome.  Retrieved 05 July from http://news.sciencemag.org/scienceinsider/2010/07/journal-publishes-cdc-paper.html?rss=1

Marcus, A D., (2010). Chronic Fatigue Link To Virus Disputed. Retrieved 05 July from http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

Marcus, A D., (2010).  CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out.   Retrieved 05 July from http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

Vernon, S., (2010).  Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper. Retrieved 05 July from http://www.forums.aboutmecfs.org/showthread.php?0&p=98116