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It’s not XMRV? NOW what?

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“It’s your right and your ability to become my perfect enemy”…Passive, A Perfect Circle

CFSAC will be reconvening for it’s semiannual meeting in October, just a few weeks away.   Nearly three years ago at the 2009 fall CFSAC meeting, the ME and CFS world was infused with unprecedented hope and excitement when Dr. Dan Peterson, acting as an emissary from the Whittemore Peterson Institute, presented us with XMRV.   The crowd came alive, both in the government building and via cyberspace, as we watched the presentation.   Wanda Jones was nearly tarred and feathered when she almost didn’t allow Annette Whittemore to speak.   A whole new era began, in which the WPI took center stage and catapulted to deity-like status in the eyes of a community that had long gone without hope.

Three years later, we are looking at a completely different dynamic.   The Lipkin study has just declared XMRV dead, dead, dead, and according to this article….http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444 ….Judy Mikovits herself “said that we have to conclude that we were wrong.”

The Lipkin study alone cost over 2 million dollars.   Add to that the costs of the variety of previous XMRV studies, the large amounts of donations that were made to the WPI, the untold number of patients who paid for useless testing and in some cases antiretrovirals, the advocacy work that pursued the American Red Cross, blood bank regulation, and public awareness, the official meetings that spotlighted XMRV in the agenda, and we have to conclude that a fair amount of resources were devoted to pursuit of the “X factor”.   Some of this was necessary.   Better to chase a potential causative factor down to the bitter end than to have any lingering doubt.   But some of this was robbery.   Patients should not have been sold tests so prematurely, nor should those who volunteered (and paid) to be part of research trials have to wonder what happened to their blood samples or whether or not their “positive” readings were real.

But we did chase it down, and it has been declared a no-go.   So now what?

Oh, wait, I have an idea!

What about this…http://www.cfsuntied.com/toxicmold.html  …an Incline Village survivor has been talking about the impact of toxic mold ever since the thing that was named CFS broke out in Incline Village in the 80s.  And to date, not one CFS researcher has taken the time to look into it.  Erik Johnson has been reporting what he and others experienced for nearly 30 years.   Maybe NOW we could look into it, since we seem to be in a research lull?  

What about others who have taken his cue and acted on it, and have achieved better health because of it?   What about Jeri Kurre’s testimony at the last CFSAC meeting, http://www.cfsuntied.com/index.html  in which she laid it out and asked “what are you going to do about it?” 

What about this?  http://cfsuntied.com/blog2/2011/09/15/and-now-for-something-completely-different/

Or this?  http://cfsuntied.com/blog2/2012/05/21/cfsthe-mold-tour/

Or the fact that Llewellyn King heard Jeri’s testimony and called her about it?  Or the fact that Erik discussed this at length with Judy Mikovits and Annette Whittemore?  Or the fact that PANDORA, Dr. Cheney, Dr. Peterson, the CFIDS Association, and many others have ALL, at one time or another, casually stated that mold toxins can be an issue for CFS sufferers?  

Why, then, is “mold” such a taboo research subject in CFS world?

And….what ARE you going to do about it?


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