InCROIable conference coverage!

Scientific conferences are so cool :-D

It s bunch of really smart people getting together to pow-wow about a common interest, sharing their newest data, brainstorming new ideas, trouble-shooting, arguing, finding new collaborators-- its just so friggen cool :-D

Unfortunately, us smaller labs can only budget for one/a couple of these a year, so I am missing out on the 2011 Conference on Retroviruses and Opportunistic Infections :( Its also kind of a downer that Average Joes/Janes arent really allowed to come, not that most people could take a week off work to attend anyway.

Lucky for us ViroBlogy (LOL!) has someone covering CROI this year!

Long-time readers of ERV will appreciate the coverage of cutting-edge topics like viral micro-RNAs and treatment advances in Third World countries, how to induce broadly-neutralizing antibodies to HIV (or rather, how we probably cant) and competitive inhibition between viruses, and HIV-1 structures and MHC presentation.

I was interested to get a peek into the atmosphere of the conference regarding XMRV. Its not a science circle I run with. Praise the Lord:

If you have CFS, do not buy a test for XMRV (they are entirely BOGUS, as Simon Singh might have said), and do not ask your doctor for antiretroviral medication (unless you are HIV positive, of course). It will be a waste of money, and you will just get the side effects of the medication, without any benefit.

Thank you Jesus. This message needs to get out, NOW. Watching CFS patients take antiretrovirals has been like watching a monkey swallow a hand grenade. The scientists credulously accepting that one damn paper to the media, or worse, the ones encouraging antiviral use, should be the ones getting this message out the loudest. The damage has been done-- but are you going to help fix it, or are you going to sit on your hands and pretend nothing happened while the public is misinformed to liver/kidney failure?

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H/T to The Lay Scientist for getting my butt in gear to write this post. Imagine you arent feeling well. You go to the doctor, they run some tests, and it turns out you have a tumor. Well... your physicians arent sure if you have a tumor or not, but they sent some of your blood to a lab, and a…
Because I am having so much fun at mah conference, I missed my chance to plug a Q&A ninja/journalist Trine Tsouderos hosted with Paul Offit, vaccine inventor. Im sorry you all missed the chance to participate (Im hoping most ERV readers are Respectful Insolence readers, so you all got the info…
One 'insider' thing I hope ERV readers learn about science from this blag, is that in science, controversies are completely normal, everyday occurrences. Outsiders might think scientists are 'mean' when dealing with anti-vaxers/Creationists/whatever, but how we treat non-scientists manufacturing a…
Pop science journalists are finally getting a bit wary of the XMRV-->CFS story. The first to stick her neck out is Trine Tsouderos. You know Trine. She wrote that great piece calling out Dr. Oz, and the krazies at Age of Autism HATE HER. Trine is super cool. So I was a little annoyed she…

The Q&A at the end of the XMRV session was also pretty good. The observation from the woman from AidsTruth.org was spot on (it seems this person had read the forums too!), while the panel seemed to agree when a speaker remarked that WPI, I mean VipDx offering a commercial test was fucked up.

I think the virus research community deserves kudos for cutting this bogus XMRV stuff off as fast as it did. I hope this minimizes the number of people with CFS who are harmed by anti-retrovirals.

Actually, the most important thing is proving without a doubt that XMRV is not implicated in ME/CFS, and if not, finding out what is. It says much about the state of science regarding ME/CFS that affected patients are willing to take these medications to improve their condition.

Helping ME/CFS patients is the most important thing, not being skeptical.

@chris:

Proving without a doubt that something is not involved with CFS (or anything elese) would be very difficult, especially when people are thinking it might be present at the limit of detection (however, of course independent of the sensitivity of the detection method), might be present in (of course unpublished) sequence variances that are undetectable by the currect methods of the bad guys, and might even go "dormant" in the blood (and thus even a negative finding by the good guys doesn't realy mean anything).

Can you (or anyone) disprove that my hypothesis, that CFS patients are really infected with HIV at levels undetectable by current HIV detection methods? You can never disprove this, because I can explain every negative finding away with arguments like: "your assay sucks balls", or "current assays are not properly validated through known positive wild type HIV strains that I have found in CFS patients using my unique methodology".

Can you propose an experiment that could prove XMRV doesn't exist in CFS patients? Otherwise, what is the point in demanding XMRV being "disproved"? Science just doesn't work that way, not because these are "the rules of the game" but because it really wouldn't work that way.

If God came down from heaven, visited the mecfsforums, and posted "XMRV doesn't exist in CFS", I'd bet that the next post in the topic would be: "I WOULDN'T HAVE THOUGHT THE CONSPIRACY WAS THIS BIG!!11!"

@RRM

I'm not knowledgeable enough to form my own opinion about this stuff. Of course I am biased. If the XMRV connection holds true, that means I and everyone else who is suffering might have a chance to get better. I can't express how meaningful that would be for us.

I try to follow the science as best I can. To us, WPI are heroes. I don't think they are intentionally trying to mislead everyone just to make a buck.

I'm probably not making much sense, but all we want is good science on our case...we have been ignored and maligned for so long without reason.

Our mindset that if XMRV doesn't work out, it will be another 20 or 30 years before someone else tries to figure it out. I'll be 50 by then, with the bulk of my life wasted to an unknown disease. It's fine if XMRV is not the cause, as long as it is proven not to be. I see people trying to snuff it out before it's being disproved.

If XMRV isn't it, we still deserve research focus to give us something. There are plenty of studies documenting biological abnormalities in us vs. controls, but zero answers to help us.

Thanks.

God wouldn't be enough.... Everyone seems to be waiting for Judy..and are quite disgruntled she wasn't invited...

My greatest concern is WPI will branch out into my field...MS.... they've already hinted about it...*sigh*

Chris, science works in the opposite direction - you have to prove both correlation and causation, not disprove it (much harder). There has been some irresponsible science done over the last few years to make the XMRV link seem much clearer and more important than it is - and yes, it probably will put researches off looking into CFS/ME, tbh. I think a lot of anger will get directed towards mainstream science for that, but it really ought to be aimed at the labs who cried "wolf!" in very public ways.

@ Mary
My greatest concern is WPI will branch out into my field...MS.... they've already hinted about it...*sigh*

The 'field that WPI is claiming unto itself is the hyper-woo* world of: "neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism".

Exactly what a "neuro-immune disease" is, is as much a mystery as the definition of "atypical MS", but yes people should be concerned that the WPI hyper-woo factory is intent on attracting MS sufferers in the same way that it has done with CFS affected people.

*IVI's definition of hyper-woo = "woo delivered by someone wearing a lab coat."

Chris,
"I try to follow the science as best I can. To us, WPI are heroes. I don't think they are intentionally trying to mislead everyone just to make a buck. I'm probably not making much sense, but all we want is good science on our case...we have been ignored and maligned for so long without reason."

I understand that you'd like a clue as to what causes your illness. That's natural. I also understand the desire to have good science. The thing is that there is good science, it just disagrees with the "XMRV is the cause of CFS" idea. The thing about science is that when the data disagrees with what you'd like, you have to change your hypothesis and go look elsewhere. XMRV has been shown almost beyond a doubt to be a contaminant, not a bona fide human pathogen. WPI should not be considered heroes. They are at best shoddy scientists using poor controls. At worst...well I'm sure you can figure that out. I do hope the cause(s) of CFS is found soon but if not you have to keep a scientific perspective and not cling to false hopes.

By Poodle Stomper (not verified) on 04 Mar 2011 #permalink

booo!

I thought for sure you'd be at CROI.

I had a bunch of friends in for it -- they seemed to enjoy themselves and I got the benefit of hanging out with folks I'd not seen in ages.

Chis@#6

"I try to follow the science as best I can. To us, WPI are heroes. I don't think they are intentionally trying to mislead everyone just to make a buck."

What depressingly positioned mote in your eye.

Given the choice between a liar and a bullshit artist, go with the liar because the liar at least knows what the truth is.

Ulterior motive is always a safer partner than reckless disregard.

Of course if more people understood this, Las Vegas would consist of a two pump Esso station that sold Mallo-Nut bars and Washoe medicine baskets.

By Prometheus (not verified) on 04 Mar 2011 #permalink

Thank you, ERV. :)

By Smurfette (not verified) on 20 Mar 2011 #permalink