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November 12, 2009 from Osler's Web
Inside the Labyrinth
THE FOG OF WAR
A CHANGING TERRAIN
Hillary Johnson writes about the CFSAC meetings she attended on Oct 29th and 30th.
Inside the Labyrinth
THE FOG OF WAR
A CHANGING TERRAIN
Hillary Johnson writes about the CFSAC meetings she attended on Oct 29th and 30th.
Well, as we all know, October 8, 2009 was our Anno Domini. Absolutely everything has changed since then. Were no longer wandering in that quarter-century stretch of desert Ill just call Before Judy Mikovits, or B.J.M. Theres a reason to be curious, even excited, about the future.
One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.
I imagine many thousandsmaybe hundreds of thousands of otherswho fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginableit was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percentgive or take.
Okay, okay, I know its politic right now to say and even think that there is still doubt, that the finding needs to be replicated, and then replicated again. There will be hold outs, people who say its another passenger, as if a close genetic relative of a mouse leukemia virus was just another weird fungus. Forgive me, I find the argument too tedious to wage in this space, so Im just reporting the controversy. I would suggest doubters explore how gammaretrovirses work, learn about the co-infections they cause, about their neurological tropism and the cells they infect in the brain, about the cancers they cause. I am so very on board with this. In Judy I trust. It is as real and believable to me as my understanding of gravity.
Ive spoken to a sampling of people from this high-charging world. I respect them. They are not incompetent or ignorant people, for a change. They have no overt biases; theyre open to new information, even if its surprising. Little could have surpised them as much as the relationship between XMRV and CFS; now, they're ready to believe anything, provided the evidence is there. But as regards XAND as a clinical entity, some of them may still be on CDC-time.
What Im hearing, and from the best minds, are comments like, At least were not dealing with an epidemic. Or, At least its not spreading. Or, (compared to AIDS), Clearly this isnt as serious. Or, At least theres no evidence anyone has ever gotten CFS from a blood transfusion. Say what? Or, At least we know this isnt a new diseasepeople have reported the symptoms of CFS since time beganwe just gave it a name. Or, from the same person, At least this isnt like West Nile Virus!