Monday, March 7, 2011

X and the clowns at the CROI circus

This week had one of the most important annual retrovirology conference in the world happening, CROI, hosted this time by Boston.


HIV has been the focus of this conference forever, with crumbs left for HTLV. XMRV has not been a huge focus in 2010, and in 2011, a full 1 hour slot was reserved to discuss abstracts accepted, along with a presentation by Vinay Patak on a different  day .

XMRV: New Findings and Controversy (List of Abstracts)

For the second year in a row, Judy Mikovits was not invited to speak or even present a poster or an abstract. Nor were Dr Ruscetti, Dr Alter and Dr Lo and Dr Hanson who all can find XMRV and exclude the possibility of contamination. Judging by the list of abstract it just sounds like the conference organizers  had an agenda : ensure that no XMRV research happen in the future.

UK retrovirologist Jonathan Stoye was the  chair of this presentation. Why CROI picked him, we will likely never know. He has also been brought from UK to the blood advisory committee in December to discuss the need to ban ME/CFS patients from giving blood. He was also the chair at the September 2010 XMRV conference where Dr Mikovits was not invited either to present, and after a lot of patient protests, she was given a ridiculusly short amount of time to talk.

Stoye made a fool of himself. He fell short of science. There is no way around this.

Here are a few quotes that came out of his mouth at the most recent conference:

"And so I think it's fair to say that the initial report of an association with CFS and XMRV has not yet been replicated. There is one paper, namely that by Lo et al, which it has been strongly argued is a support of the idea that a murine leukemia virus like virus is involved in CFS, however I'm not convinced by that paper, I'm happy to discuss it later on, but I don't think that that can be taken as positive evidence to confirm the study by Lombardi et al. So, not only has XMRV not been found in CFS patients, it has not yet been found in anything like the original 4% figure in control populations, so there's now considerable doubt about whether this virus is associated with XMRV "

"I predict there will be less and less interest in XMRV and association with disease."

Dude, this is what you wish... because you can't stand seeing someone other than you being able to find a retrovirus that will revolutionize the world of patients that were (and still) thought of having a psychiatric illness. This is called professional jealousy. So if I can give Stoye an advice, spend more time in the lab, culturing and not focusing so much on the PCR, and much, much less time talking with the boys in the retrovirology circuit.

And a last one, really precious... 

"I can talk about an anecdote among urologists in Britain. They were suddenly alarmed that the cell line they’d been using was loaded with virus. I think there are some of us who’ve been working with XMRV or related viruses for, well I’ve been doing it for 35 years or something and I know I’m negative. Or at least I was the last time I looked. "

Stoye may want to send his sample to VIP DX in Reno, because retrovirologists in UK can't find XMRV. 

A second topic of controversy is the comment made from Dr Jeanne Bergman, in the audience, from AIDS truth. Dr Bergman, if you google your name you will read this. The ME/CFS patients deserve an apology. 

" There is a curious correlation between people who don't believe in the existence of HIV or don't believe that HIV is pathogenic and people who do believe that they are infected with XMRV and some of those people, who have actually got AIDS like symptoms are taking ARVs, not for their HIV but for their XMRV. It's absolutely fascinating and I hope some day someone will write it up"

I have only been ill for 2 years, which is not long for the average ME/CFS patient. 10 years or more of being housebound or bedbound is fairly common. There are people in nursing home. Most patients have not even been diagnosed, or gotten appropriate treatments. For the lucky ones that got Ampligen as part of a trial, and improved, it was just too cruel to deny them the drug that allowed to get their lives back. What I can say, is if there is a small chance of me recovering enough to work out, go back to work, travel and enjoy life again, I would take whatever would make me recover. May it be antiretroviral, 
Ampligen, Rituximab, or others. I would also risk to be the placebo in a double blinded clinical trial. I would move across the country for treatment. It would be better than being judged by doctors that don't know squat about the disease so ironically called Chronic Fatigue Syndrome.

And lastly, the conclusions from the panel including Bill Switzer and Stoye, that XMRV is an infectious virus, but not related to ME/CFS and that lab workers should be tested for it. But remember earlier on he said that association with disease will generate less and less interest. 

The absence of Dr Judy Mikovits, Dr Ruscetti, Dr Hanson, and others have left the patients very upset since the CROI conference presented a very unbalanced view of the state of XMRV research. But just a few days later, we learnt that all this nice people, AND Dr Luc Montagnier, one of the co-founder of AIDS, were in South Florida discussing the real matters, Ampligen and the retrovirus. You can see the article here.

That news, and many many recent  positive articles in the New York Times and Washington Post revived the morale of the troops

We can only move in the right direction from here. There should be news from serious studies, including one that have happened in Calgary, Alberta.