Watching Harvey Alter, Judy Mikovits and John Coffin on YouTube struck me as life immitating myth. Spock, Kirk and the Klingon. Yoda, Skywalker and Darth Vader. God, Moses and Pharaoh.
Here is the tape of Dr. Alter as King Solomon, one of our dragon slayer, Dr. Mikovits, and another of Dr. Coffin trying helplessly to close Pandora’s box with this unbelievable statement: “I see the next step as leaving the virus that we know as XMRV behind.”
Dr. Coffin’s conclusions don’t make any sense to me. Let’s for a moment say he is correct and XMRV was created in the lab in the early 90’s. It is still a xenotropic MuLV related virus, capable of infecting human cells. Why does he think it couldn’t have infected humans in the lab and gotten out that way? Because there were sick patients before the event? A more likely explanation would be that there was already something else out there before this one. It’s not clean and neat, so let’s all close up shop and go home for another couple of decades. Even he said there could be another retrovirus. And why pray tell isn’t he looking for it? The patients have something consistent with retroviral infection. You won’t find it unless you look.
The discussion of the name is a sad one. I don’t have much of a stake in the name. I don’t mind CFS that much and I don’t think it’s going to go away. I think of the word fatigue the way materials, like metal, can become fatigued. I don’t like ME much either because I think it’s stigmatizing in another way. It implies we’re all brain damaged, encephalopathic, and I believe the damage is mostly reversible. I like non-HIV AIDS.
The case definition discussion also seems besides the point to me. My belief is that the presence of infectious retroviruses is the only true biomarker for the disease and we don’t know what is there yet. There are clearly XMRV negative people who are clinically indistinguishable from the positives. Those people shouldn’t be excluded from a diagnosis. Like Hep C used to be non A non B hepatitis, I think our disease should be called non-HIV AIDS. Personally I think that the people excluded by this or that set of criteria mostly do in fact have the disease. Another problem with definitions is that it is a relapsing remitting process. People who meet a set of criteria today, may not tomorrow (thank God).
Case definitions and new names aren’t going to save us. The only biomarker for the disease is the detection of the responsible retroviruses. For now, that is XMRV, but there will be more. Until then, we can only measure downstream effects, cytokines and NK cell profiles, inflammatory markers, a few other things that demonstrate how sick we really are.
Our down and dirty survey is producing fascinating unanalyzed data. We’ve already refined the questions slightly based upon what’s coming back to produce a more complete picture and thank you to everyone who has responded to requests for further clarification. We will report. For now, the impression from reading the surveys is that many CFS patients have family members with CFS and associated diseases. Please spread the word and encourage everyone with the disease to reply, whether you have an affected family member or not. If any statisticians or epidemiologists are interested in participating, please get in touch.
I thought this article about Google’s founder inspiring and relevant to our predicament: Sergey Brin’s Search for a Parkinson’s Cure.