Dr. Racaniello and Dr. Bateman talked XMRV (mostly) at the CFID’S Association Webinar on Wednesday.
DR. RACANIELLO gave us a bird’s eye of retroviruses. Right now there are two models for human infectious retroviruses; HIV, which replicates madly in immune cells and sends millions of virions into the blood to infect more cells and HTLV-1, which does not replicate much and does it’s damage by turning on bad genes in the cells it is found in (sometimes turning them cancerous).
He noted that XMRV, at this point, seems more HTLV-like – it’s present in small numbers in the blood and doesn’t appear to be replicating much.
(This could be misleading, however. XMRV could be replicating madly in some other part of the body. We know that the immune cells contain APOBEC3 enzymes that ‘edit’ XMRV sequences – thus largely shutting it’s replication down but that prostate cells do not contain this enzyme allowing XMRV to replicate in them. Primate studies of XMRV indicate that XMRV infects many cells – it uses a receptor commmonly found on cells to enter them – and that, upon infection it spreads rapidly throughout the body. It could be flourishing in areas of the body that have not been studied yet).
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The CFIDS Association XMRV Webinar with Dr. Racaniello and Dr. Bateman
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The Central Issue Remains the Same – How to Find XMRV? – I asked Dr. Mikovits and Dr. Racaniello about XMRV and both were good enough to give their viewpoints on where we stand now. This is a long article; in it they talk about
* how to test for XMRV
* whether a different type of XMRV is present in CFS patients and how it got there
* the importance of subsets
* the history between the CDC and the WPI
* how the CDC study may have gone wrong.
Check it out here!
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PANDORA has been engaged in a month long contest on Facebook by Chase Community Giving. The top 200 charities will win $20,000 – an enormous amount of money for a CFS non-profit. As of 3 days ago PANDORA was at a solid 104th place. Now, with 21 hours to go, because of a last minute rush by other groups, PANDORA has sunk to 165th place. At this rate they will lose the contest on the last day and no CFS groups will take share in the winnings.
PANDORA has big plans – including a Neuroendocrineimmune Treatment Center – that can benefit us all. They are a strong force for change in the ME/CFS Community. Let’s show that we as a Community can make this happen – that we can band together and support them and us and bring this home for one of the hardest working ME/CFS groups in the county. All it takes is voting on Facebook.
You can find instructions how to do this here: http://www.forums.aboutmecfs.org/content.php?184-For-Non-Facebook-Users-Vote-for-PANDORA&nocache=1
Check out Marly’s latest blog on PANDORA and the contest.
http://agentforchange.blogspot.com/2010/07/chase-community-giving-1-day-left-to.html
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Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the Alter paper. She reports that the primary investigator at the FDA was Shyh-Ching Lo and that the paper was near enough to publication for a galley proof to have been sent to the editor’s office.
Interestingly the Alter paper was not a surprise to the CDC at all; three months ago they had briefed the CDC extensively about the study and it’s outcome. The CDC, on the other hand, kept the outcome of their study close to their vest leaving the Alter researchers greatly surprised when it came out.
After a turbulent couple of weeks in which both the negative CDC paper and positive Alter paper were reportedly about to be published and then, at the behest of public health officials at the DHHS, both were withdrawn, the CDC paper was published in the Journal Retrovirology. As was rumored it was negative on all counts – no XMRV was found. Perhaps not surprisingly it was quickly engulfed in controversy.
Participants - The lead author, WM Switzer, has 70 citations in PubMed – many of which are on HTLV. Oliver Hohn -associated with the Robert Koch Institute in Germany – was a member of the German team that recently found XMRV in the respiratory tract of immune compromised patients. Graham Simmons, a member of the Blood Systems Research Institute at the University of California at San Francisco, has a fairly short but rather jam packed publishing record dating back a few years. Walter Heneine was heavily involved in the DeFreitas retroviral research at the CDC in the early 1990s. At one point he tried to bolt the research project fearing that it would taint his career. Apparently it didn’t; he’s still at the CDC and he was one of five researchers from the Division of HIV/AIDS at the CDC searching for the virus.
Amy Dockser Marcus at the Wall Street Journal has become the go-to journalist for news on XMRV and CFS in the national media. Now she’s broken the news that the Alter study, soon to be published in the prestigious journal “The Proceedings of the National Academy of Sciences of the United States of America”, has now been withheld from publication. This followed reports that a negative study by the CDC was yanked at the last minute from publication in another reputable journal ‘Retrovirology”. The papers were reportedly put on hold because because ‘senior public health officials’ wanted to see either ‘consensus’ or simply a clear reason why the papers disagreed. Marcus called the move ‘rare’ and stated it was causing ‘a stir in the field’. IACFS/ME President Fred Friedberg called for the immediate publication of both papers.
The path to publication is tricky. There’s the need to get money, usually lots of it, to start a study. If a researcher works in an institutional setting the resulting paper may have to pass review at that level. Then they have to meet the criteria for publication. Once that occurs a sigh of relief is undoubtedly given because now the paper is now on its own. The scientific community will poke and prode and shine a bright light on it and it may fail but at least it’s out there…months or even years of research have a tangible result.
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‘Altered’ Reality: the XMRV Papers Disappearing Trick
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Patients leapt for joy at the news suggesting that the WPI’s findings have been validated by two major institutions in the US but not everybody was happy that the information had been released in a way it was. The Whittemore Peterson Institute’s Facebook site posted a link to Dr. Raccienllo’s blog but refused to discuss the press release otherwise, citing the need for a prepublication embargo of scientific findings. The CFIDS Association didn’t post a link anywhere as they cited the same need. Both organizations either fund or produce research and need to maintain strict standards regarding scientific mores.
ESME – an Alliance of European professional researchers, felt no such compunctions, immediately sending a link out to all their subscribers and posting the press release on their website. Dr. Racienello immediately posted it on his blog but neither the ME Association nor MERUK nor Invest in ME, however, have reported on it nor does it appear that other news services have. It’s hard to imagine that the ‘scoop’ could imperil publication of an important paper but the episode does underscore the antagonistic relationship between a press that wants to expose everything and a research community for whom prepublication exposure can have dire consequences. Did the Dutch Journalists do us a favor?
Dutch Journalists have been all over the European XMRV Conferences. Now in a startling announcement two Dutch journalists from the Health Professionals Journal Ortho report that they were able to obtain a lecture from NIH official Dr. Harvey Alter at the Blood Transfusion workshop May 26/27th in Zagreb, stating that both the FDA and NIH had confirmed the WPI’s original findings.
Dr. Harvey Alter is the Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. The Dutch journalists report that Alter’s lecture stated “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”. The lecture also purportedly stated “the association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings.”
The Dutch report does not include rate of XMRV prevalence found in CFS but does report that the ‘association with CFS is ‘very strong’ which can only mean, if true, that it was found in a much higher percentage of CFS patients than healthy controls. Indeed the similarity between the FDA and NIH findings of XMRV in healthy controls and the WPI’s findings suggest that prevalence rates in CFS may be similar as well(67%).
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XMRV Confirmation Just Around the Corner? Journalists Report that NIH and FDA Confirm Science Study Findings (!)
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When I finally got what the Chase Community Giving Contest really is it made my jaw drop. What it is is easy money for non-profits – and lots of it – and in these difficult economic times that’s a godsend for nonprofits.
Chase has deposited a boatload of money (5 million dollars) that it’s going to give away to the top 50 vote getters in its Facebook Community Giving contest. The top organization is going to get a check for $250,000; the next four are going to get checks for hundred thousand dollars, and the next 45 are going to get checks for $20,000.
The contest is a chance for people to show their love for a CFS nonprofit and we’re concentrating on PANDORA here. Why should you show your love for PANDORA, in particular? Because it’s leader, Marly Silverman, is a small woman with big goals – with WPI-like goals. She tried to get a Center of Excellence built with Dr. Klimas at the head in Miami. When the Univ. of Miami bowed out and she found more fertile ground in New Jersey she moved the battle up there. Over the past couple of years she gotten the support of key state legislators and support groups to build a Neuroendocrineimmune Center there. Just this month the legislature passed a resolution supporting their efforts.
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Open Pandora’s Moneybox – Vote in the Chase Community Giving Contest
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Dr. Klimas has been one of the central figures in CFS. A prominent AIDS researcher in the mid-1980′s she became acquainted with CFS when patients with another strange kind of immune dysfunction showed up on her door. In Osler’s Web she recounts that she, like everyone else, ‘tried not to believe in it” (eg CFS) but (unlike others) she just couldn’t push those strange immune abnormalities away. Other researchers brushed CFS patients off as depressed but Nancy Klimas had a background in psycho neuro- immunology and she knew that depression did not to that to the immune system.
Working together with Dr. Fletcher Dr. Klimas helped to open up a new field of endeavor in CFS research as the two documented natural killer cell dysfunction, created new a test for it and linked it to other findings in ME/CFS. Indeed, over time, natural killer cell dysfunction has become the central immune finding in CFS. As she searched for natural killer cell problems Dr. Klimas ran one of the three federally funded CFS research centers in the US until the Centers programs were closed as the CFS program was moved from the the NIAID to the Office of Research on Women’s Health.
