Thursday, September 9, 2010

You seek what you want to seek

Day #2 of the XMRV Conference has come and gone. The good news, if you missed the live webcast, is that it's already up on YouTube. Definitely worth the watch if you have a keen interest in ME/CFS.

Mindy Kitei of CFS Central was there, and she asked the panel a couple of questions. Unfortunately, her second question somehow didn't make it onto the replay I've linked to. Fortunately, Lannie in the Lymelight has the missing clip (scroll down for the video). Mindy begins at 2:45:
My question is about the negative studies for CFS. And I understand, Dr. Coffin, you say, we still don't know. But having read these, and having reported on this disease since 1994, the negative studies—many of these patients in CFS do not have CFS in these studies. They have depression. And Dr. Leonard Jason has done studies on this. That the "empiric definition" that the CDC uses—38 percent are depressed. So you're not even dealing with a cohort that has the disease.

And I think that that's really important. Instead of saying that we don't know yet—which, we don't know yet. But there are patients who have been desperate for twenty, thirty, and forty years. And I understand, it's premature to do these drug trials, but we also have to call a spade a spade. And when you have a study, for instance, by the CDC, and they don't find it, OK. And then they want the RKI in Germany to confirm. RKI in Germany didn't find it in prostate cancer. Why not, Mr. Switzer, why not go to the Cleveland Clinic, who did find XMRV? You know, you seek what you want to seek. And I think it's important that we really see things as they are and not how we want them to be.
At this point she was cut off by one of the panelists, who insisted that nobody had any interest in deliberately obtaining negative results, and that they weren't there to talk about the CDC or about policy in Britain.

Which was kind of funny, given that she hadn't mentioned policy in Britain.

Hat tip to @OtisQuila for directing me to the clip.

Tune into CFS Central for updates.


slothgoth said...

But it sure shows what people think is going on over here in Britain, doesn't it? :(

David said...

Thanks for sharing and transcribing this!

Anonymous said...

It was interesting how Mr. Stoye emphasised the point that nobody would do a study with the intention not find XMRV. He doth protest too much!

Bad attitude McClure has a bad attitude.

Keep up the great work Cinder Bridge :)