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Hillary Johnson: A Changing Terrain



November 12, 2009 from Osler's Web

Inside the Labyrinth

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!


All shall be well . . .
Santa Rosa, CA
Hillary and CFSAC

Thanks Kim for posting this.

Hillary's latest blog post is well worth reading in whole. Amazing that I watched the same CFSAC conference that Hillary did and she came up with this? It gives me shivers (in a very good way!) reading her take on it. I am impressed with how she can put it all in a larger, more meaningful and moving context.

Two sound bite worthy quotes (or fund-raising T-shirt slogans):

"BJM, Before Judy Mikovits"

"In Judy I trust."


Senior Member
She's a wonderful writer. Reading her is effortless.

We have been graced by her gifts.



Senior Member
She does rock! And, what a stroke of brilliance to end with Don't Dream It's Over and have that rousing concert version right there for us. Sniff.

As to Sixpence... Heresy, indeed!

We might as well just use There She Goes which makes no sense at all!



ETA No, No! KISS ME! We can organize Kiss Ins and we'll all pucker up and walk towards Reeves and Weasely and White and... with Kiss Me playing!



In Judy I trust. Exactly. Some people are so pleased with themselves for their doubt, but I believe in the study because of it's great credbility, and because it simply makes sense the way nothing else has. You cannot equate this with anything that's been surmised about CFS ever, because nothing has had the prestige of Science, or the co-sponsoring institutions, and nothing has made sense.


Senior Member
Great stuff!

Loved the whole blog - its pure gold.
Hilary's description of Annette Whittemore eventually getting to have her five minutes gave me a giggle. I cringed watching it on Youtube :eek:

Although the sixpence version is excellent, I have to vote for Crowded House too.


Senior Member
Bay Area, California
Thank you Kim for alerting us about Hillary's new blog. She is an extremely talented writer.

I'm curious about this:

“We were able to take serum frozen in 1984—at the time I asked for the CDC’s help with this disorder—thaw it, and infect cells [with XMRV] and that is very dramatic to me. It's somewhat frightening,” the doctor continued, "that you can take blood that's been frozen for twenty-five years and obtain active infective virion."

At first I was thinking that that doesn't show that the patient had XMRV so I looked for the video of Dr. Peterson stating this and when I watched it I saw that right before this he talks about a patient from 1984 whose blood was frozen then and does have XMRV in it. It's at about 8:40 on this video:



What does this finding mean, what's the importance you can thaw out XMRV and still infect cells 20+ years later?

Does it mean it doesn't need a host to survive?

And so the way XMRV could be transmitted is different than first thought?

Thank you. ;)