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XMRV at the Fed: Conspiracy or Confusion





Cort Johnson

Phoenix Rising - Cort Johnson's Column

...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.









Cort Johnson publishes the free Phoenix Rising newsletter and runs the website of the same name. An ME/CFS sufferer himself, since 2005 he has used his keen intellect to follow the latest developments in ME/CFS research and treatment and translate the often complicated concepts into language that the layman can understand. An active advocate Cort has been participating vigorously in the Campaign for a Fair Name to get CFS recognized as ME/CFS.




 Tuesday, July 20th, 2010:


XMRV at the Fed: Conspiracy or Confusion?


by Cort Johnson



Hillary Johnson [ME/CFS research author] 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 [Dr. Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda]. 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.

The biggest question right now concerns the results of the testing the CDC did on the XMRV samples from the WPI. Hillary reports that Switzer proposed a collaboration between Dr. Mikovits, Illa Singh at the University of Utah and the CDC and that Dr. Mikovits sent samples to both Dr. Singh and the CDC. Dr. Singh was able to identify XMRV positive samples while the CDC did not. (Whether that, in fact, happened, doesn’t appear to be a question any longer; it now seems clear that the CDC was unable to identify XMRV positives in the WPI sample set). If the effort was truly a collaboration then we must assume that both the WPI and Dr. Singh are aware of the CDC’s findings.







Conspiracy? So what is going on? The events of the past couple of weeks were also cast as simply the latest evidence of an ongoing conspiracy to save face by upper-level bureaucrats that is doomed to fail. Dr. Fauci [Director of the National Institute of Allergy and Infectious Diseases (NIAID)], Hillary believes, lacks the ‘ethical compass’ to do anything more than to worry about his reputation. If saving his reputation means condemning millions of CFS patients to a disabling infection so be it. She acknowledges that respected researchers like Dr. Alter will not be swayed by internal pressure and that the truth will come eventually out. With the withdrawl of the Alter paper, and the coverup of the CDC’s inability to find XMRV samples in the WPI’s samples, the CDC and NIH are simply playing a delaying game that they are doomed to lose.

Or Confusion? – Only time will tell, of course, but the conspiracy theory has some holes, the biggest of which is – why engage in a conspiracy that is doomed to failure? If the truth is going to come out – and with all the researchers working on this pathogen – it does appear that it is going to come out, then why suppress evidence now that will come out later, and in doing so leave you looking a) culpable and b) incompetent? Why not simply jump on the bandwagon and save your own personal reputation and reputation of your institution?

Motive - Another question concerns motive; if you’re going to engage in an activity that, if exposed, could damage or ruin your career, you’re probably going to have a darn good motive for doing so. It’s clear that no one in the federal government has done well by CFS patients…they have ignored this disease, they have not funded it, they have not chased down promising leads….their history is a decidedly ugly one and they have alot to make up for.

But covering up a legitimate finding is another story indeed – particularly if it involves more than CFS patients. The 600,000 or so possibly infected CFS patients have probably never been the main issue for the feds, the big issue has been the 10 million or more Americans potentially infected with this pathogen and any conspiracy theory must take that into account. Are senior officials at the NIH and CDC willing to cover up evidence of XMRV in the healthy population simply as a means of getting at CFS patients? That seems very unlikely.

Face-Saving - Then there’s the face saving question. There is going undoubtedly going to be egg on the faces of many Federal officials, and hopefully they will be held to account when the cause or causes of CFS are validated but. of all the possible factors, XMRV provides a great escape hatch for them, the likes of which they will probably never see again. XMRV was, of course, only discovered a few years ago; more importantly, it was discovered using a kind of technology that only became available a few years ago. Sure it’s possible that if researchers had looked really hard at CFS samples for pathogens they could have found it but XMRV didn’t show up even in the one group that did look really hard for pathogens – the WPI. In some ways XMRV presents a great opportunity for the federal research community to squiggle out of its decades denial of CFS with at least some of its face intact.

Putting Stakes in the Sand - Instead of the broad ranging conspiracy theory to keep CFS patients down a more likely explanation for the events that have taken place is that everybody thinks they are correct. In this scenario the CDC tests the WPI samples, is unable to find XMRV in them, believes it knows why and then proceeds to put its stake in the sand by publishing it’s paper. (In this scenario the CDC believes it can find XMRV and that XMRV is actually not present in the WPI samples! (How does that happen?))

This is a tough issue; it lends itself to conspiracy theories…if you believe that the truth will come out in the end there doesn’t appear to be a logical reason to try to cover something up; in this game the goal is not to pretend to be right but to actually be right.

Dr. Alter and Dr. Lo test the WPI samples, do find XMRV in them and proceed to at least try to publish their work. Yes, that work is withheld due to political pressures but no one doubts that, pending the results of more testing, it will not come out and we will know what they found. Dr. Singh also finds XMRV in her set of samples and begins her own study, the results of which we don’t know yet.

That paper will come out as well as will the work of the DHHS study overseen by Dr. Mikovits, the WPI’s UK study, the Montoya-Columbia study, the Swedish study, the just funded Hanson-Bell study… and work by Abbot Labs and Glaxo-Smith Kline and other labs who have a big financial stake in proving that XMRV exists….At the end we will know who was right and who was wrong and we should know why. (My guess is that the answer will be such a surprising one that no one will be overly embarrassed.)

A Different World - This isn’t 1993; this is not a youngish researcher vs the CDC – there are real heavy-weights involved on both sides. This is Dr. Ruscetti at the NCI, Dr. Silverman at the Cleveland Clinic and Dr. Alter at the NIH vs the CDC. Dr. Alter has won the equivalent of the Nobel prize for medicine (the Lasker) and he has over two hundred citations to his name. He is a researcher with a considerable reputation - no one one would think who could be pushed around.

Two Papers Yanked: Not One - We shouldn't forget either that both the CDC and the Alter papers were help up for more testing. Remember the imbroglio we had over the possible release of the CDC paper a month or so ago? That was because the DHHS pulled that paper as well. It was unfortunate that the CDC finished their testing procedures first, and presented their negative paper (unchanged). But now Dr. Alter is doing his testing and will presumably shortly be publishing his paper.

While past history might suggest otherwise there's no need at this point to assume that the DHHS paper-yanking - as unsettling as it was - was anything other than what was reported: an attempt to resolve the differences between two contradictory papers. Only time will tell how this will work out.

Too Much Light - My guess is that there are simply too many good researchers involved in studying XMRV for the truth not to come out. The CDC has drawn it’s line in the sand – it believes it has the goods on XMRV; the WPI, the Ruscetti's, Dr. Alter and the other researchers have drawn theirs – they believe they have the goods on the virus; we will see in the end who prevails.




Read more at Phoenix Rising


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