I'm only in the middle of reading it, but it's a really nicely written piece. Thanks Cort.
Some of it sounds worryingly familiar with XMRV and the WPI.
edit: Just done.
I didn't really know much about this before, and this piece made the DeFreitas work sound more solid and widely respected (at the time) than I'd realised. I really hope XMRV leads on to somthing more solid. I feel like some past mistakes, specifically in terms of presentation, have been repeated. Wait and see...
oh, and to the extent that the previous CDC failure to follow DeFreitas' methods changed the approach at the CDC this time, we can thank Hillary for that. Her book exposed it. Without that exposure and the patient anger afterward, then they might have done XMRV same as they did DeFreitas. But there are thousands of eyes watching this time, the challenge is on them, and all of this because we know what happened with the DeFreitas virus research. And the reason we know is because of Hillary. She not only served us, her work was a public service.
I think the CDC is stuck between a rock and a hard place with regards to the XMRV Retrovirus replication. If they don't find anything, then they know WE will scream and point fingers at them that they did this failure delibertly. If they succeed, then they opened Marly's Pandora's Box and the whole rest of the history, specifically including the Defreitas Retrovirus, will come hurling out with a massive explosion.
I am just grateful that there is an Internet that spreads information far and wide at seconds speed to the world so that little can be hidden AND that there are other non-government researchers replicating the WPI XMRV protocols exactly. This pushes aside the CDC and what they come up with (negative) when other outside labs are able to replicate and they aren't.
While practicing in Charlotte, NC and based on continued evidence of unusual immune disturbances by flow cytometry including CD4 depletion (ICL) in 15% of CFS patients which was investigated in my clinic and dismissed by the CDC as clinically irrelevant and continued high RNAse-L activity (1994), I contacted Elaine DeFreitas PhD at the Wistar Institute who ultimately found HTLV-II-like genes associated with CFS (1991). Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist). Elaine argued that these two scientists with diametrically opposing results manipulated the magnesium concentration which affects the primer stringency and got whatever result they wanted, to make their opposite claims. Her proposal to physically run the assays side by side with the CDC scientists to see if these results could be replicated was dismissed by the CDC. Dr. Gow would later publish his opinions (1992). Left unfunded by senior administrators at the NIH and the CDC, the search for a retroviral link in CFS dissipated and was lost until Judy Mikovits PhD, operating out of the independent Whitmore-Peterson Institutes, revived the long search. I congratulate her and the Whitemore-Peterson Institute.
My take on this is that you could justify just about everybody's response to that first retrovirus. I came in expecting the CDC to be the bad guy. I expected them to show utter disregard to Dr. DeFrietas findings but I can get that at all. Yes, it wasn't a pretty situation. Yes, some parts of the agency did show disregard (and worse) for CFS but Dr. DeFrietas had her proponents and one of them was the guy heading up the retro virology study.
It was was never a black-and-white situation/ us vs them situation. It was much more complicated than that. Dr. Folks sincerely tried. No, he never replicated her experiment exactly but his experience was that that wasn't necessary. A good number of labs tried and failed to replicate her experiment as well. On the other hand it was also clear that resources were always an issue for Dr. DeFreitas - if she'd had more time and more resources perhaps things would have turned out differently or its possible that they woudn't have.
What I really really got from reading Osler's Web and a few other materials is that this is a very difficult part of science and its a very expensive part of science and you'd better have lots of money if you're going to engage in it.
What Osler's Web didn't include is that Dr. DeFreitas got one more chance to replicate her findings using her special techniques and her patients and failed to distinguish between CFS patients and controls. This really highlights for me how difficult this arena of science is; she was clearly an excellent researcher, she had excellent credentials and she was working with an excellent institution. At the end of Osler's Web her other finding of note - HTLV-2 in multiple sclerosis - is under attack as well and it appears that that finding didn't work out either.
I'm really astonished that the CFIDS Association was somehow made out to be one of the bad guys in all this. They were the only ones to fund Dr. DeFreitas, so far as I can tell, for five years. They funded several studies on her finding that turned out to have negative results. Dr. DeFreitas, herself, was unable to replicate her own findings in 1993. Even after she was unable to do that they funded her for at least another nine months. You have to ask yourself why a small organization with not a lot of money would keep pouring a lot of money in her work? Neither their scientific review board or another panel CFS professionals recommended that she be funded further. They also funded Dr. Martin's (failed) search for a retrovirus and they funded Dr. Grossberg's search for retrovirus for years. As late as 2001 they were funding him. His finding didn't work out either. Yet somehow they become one of the bad guys.
We are lucky now almost 20 years later to be blessed with much better technology. It's clear that the WPI also has done much more work than Dr. DeFreitas was able to do. Most importantly they been able to show that what they've found is able to in fact other cells; whatever it is its 'alive' and kicking - its not just an abberant gene sequence or a whacked out endogenous retrovirus.
I think we really are in a different situation this time. We have at least three groups from different federal agencies pursuing this; there's the DHHS working group of which Dr. Vernon and Dr. Mikovits are involved (big difference there!), the National Cancer Institute and the CDC (AIDS division) plus we know there were multiple lab's plus several CFS researchers that are digging into XMRV. I too was surprised by Dr. DeFreitas experience. I had thought that she was a young researcher just out of graduate school but she'd been publishing for something like six or seven years and she had around 20 papers under her belt. I think she was in her mid-30s - still young for a researcher but certainly not wet under the ears.