The Final Betrayal
by Danny Ze-dog on Friday, June 10, 2011 at 3:39pm
I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to. But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something. So here it is.
I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist. I don't know what role it plays in ME/CFS, but neither does any other scientist.
I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated. I want a true replication study NOW.
I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV. I want 'scientists' to stop claiming that non-replication studies ARE replication studies. I want any researcher, journal editor, or 'science blogger' who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment. I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.
I want at least one sliver of justice for millions of sick people who have had none. If nothing else, we should have the benefit of supposedly dispassionate, objective science. We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics. If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.
For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor. At what point do we decide as a community that it clearly will not? And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?
The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research. With whatever energy we have, we need to fight to stop that from happening. NOW. We need to let those who would bury it, or let it be buried, know that we will not tolerate this. We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way. We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections. If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else. This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.
Well said, and as I am XMRV antibody Positive I also would like REAL Science Research to continue without the biased Politics that are getting in the way AGAIN as it did in 1990 and has been for the last 25 years...
ReplyDeleteI think the WORLD is counting on REAL SCIENCE and should settle for Nothing LESS...
Thanks Danny and Liz ♥
A long time ago there was Giordano Bruno, Galileo Galilei, ... and the Holy Inquisition... and now there is... I don't know who or what?
ReplyDeleteWell said!!! and this is what lives in me also. What would I like to translate this to Dutch. So many new patients that are affected and do not understand and now all of this. Thanks Danny and Liz.
ReplyDeleteThank you for this blog!
ReplyDeleteRIGHT ON!
ReplyDeleteWell said, Danny. I don't know if MRVs cause ME either but I do know that the pursuit of the question is not being handled with impartiality and objectivity, nor in the genuine interests of the sick. I agree that we must keep sending a clear message to those involved: we will not tolerate the burial of MRV research. We want the truth and we want it now.
ReplyDeleteExcellent. Thank you Danny and Liz.
ReplyDeleteWhy would anyone want to bury the putative XMRV-CFS association? Who would benefit from that? It seems to me that there is a lot more money to be made selling antiretrovirals for CFS than not.
ReplyDelete@Anonymous - you forget that someone has to pay for all those antiretrovirals - private and government health insurers. In fact, they would have to pick up the tab for many aspects of testing and treatment for patients that so far they have been denying. They might have to do the same for patients with retrovirally-induced malignancies, who would live longer (i.e. become more costly) as a result. Also, think of the disability pay outs that would suddenly be required for patients if CFS was seen as a retroviral disease like AIDS instead of a non-disease, as it is currently. Those are just some of the potential reasons.. from the scientific standpoint, there are others,including patent rights.
ReplyDelete@D.Y. OK, fair enough. But why would folks in the virology/basic science community have a political axe to grind regarding this work? I am sure this will get worked on by people until a firm conclusion is reached. Heck, I study viruses for a living and would love to find a new virus that causes disease. And I sure ain't taking marching orders from the healthcare industry or anyone else.
ReplyDelete-k
Hi k.. if you study viruses for a living and don't know the answer to your question, you have been very fortunate not to have been caught up in the politics that dominate almost every field associated with medical research!
ReplyDeleteLook into the history of the other two human retroviruses, HTLV and HIV, especially the struggle for patent rights that led Bob Gallo to claim Luc Montagnier's findings reflected contamination, and Robin Weiss to claim he did not find the same virus as Montagnier's group (he was later obliged to admit that he had been "mistaken").
You also have situations where researchers depend on large grants from pharmaceutical companies who are expecting results in their work on a particular pathogen - such as Roche's prior investments into HHV-6 as the cause of ME/CFS. The ME/CFS research field may be the most highly politicized one of all, with direct interaction between state policy makers and highly influential scientists in the MRC in the UK and in the Netherlands, who have always opposed the idea of an infectious cause for ME/CFS, and have a great deal to lose if they turn out to be wrong. Add to that the interests of researchers associated directly or indirectly with large clinical laboratories intent on developing their own marketable assays and you have a tremendous incentive for the kind of political (and unscientific) warfare that is going on now in XMRV research.