Dusty Miller approached this community in a way that was unethical: he hadn't received IRB(Institutional Review Board) approval of his protocol.
He wanted to use an untested assay that, as I understand it, would falsely indicate contamination when people were actually XMRV+, undermining the work of the WPI. This is a very important issue. Until things are much clearer people should be very chary about participating in experiments which are using this assay. As I recall, he wanted to perform a "definitive" study. Don't they all.
Miller claimed to have a great familiarity with the political issues animating the M.E. world. If he did and still was going to enroll patients from Buchwald's clinic, which views the disease as factitious, then he was not truthful.
If his commitment to the XMRV project could be swayed just by virtue of his conversations with other retrovirologists what does that say about his earlier assertion that he was on board with the association of XMRV and M.E.?
His participation on me/cfs forums was not as innocent as you describe; he gave as well as took. If a handful of voices, some abrasive perhaps, could sway this scientist from significant research, what sort of scientist is he?
Miller ultimately agreed to use both the mtDNA and IAP assays in the study - that is my understanding and I think you missed some points that both Ecoclimber and I raised; a) Ecoclimber said they missed a deadline and b) my understanding was that as he talked to more retrovirologists Miller's interest faded. Dusty Miller came on those Forums for at least a month, I would guess - he hung in there through thick and thin - it wasn't the abrasiveness of the patients that ultimately dissuaded him - it was other things.
I would note that he is still engaged in XMRV research and he is apparently collaborating with Dr. Silverman on XMRV integration. He did do work with nerve cells and XMRV and my understanding is that that paper will be published. So he is still working on XMRV - he's just not, at least at this moment, doing the patient study.
I think the ME/CFS Forums were ultimately quite helpful in an important way....We thought that going to Miller with his reputation was enough but the uproar prompted us to contact Dr. Mikovits -and doing that surely made the study stronger - since he was able to incorporate her concerns into it.
I didn't say that Miller was going to use Buchwalds clinic. Please read what I said carefully. He had no intention of doing that -that was why he went straight to the online community. He was actually trying to AVOID doing that. The uproar, however, could have pushed him in that direction. He was accused of lying, of having no experience with gamma retroviruses, warnings were sent across the internet that he was out to get XMRV.... - someone filed an ethics complaint against him. As Ecoclimber said, institutions don't like that kind of publicity.
The IRB! What an issue. The ethics complaint was that he approached patients too quickly ( he didn't Ecoclimber did and Miller protested that)...therefore the community felt he shouldn't be trying to find XMRV.....which I felt was putting the horse behind the cart..Deciding not to back a study partially because you're concerned about IRB issues is missing the mark IMHO.
Usually good studies are derailed because of picky IRB Boards and researcher rue how long it takes to get through them. (I know one that just was denied by a picky IRV Board). Now you have patients actually going to the IRB board and saying stop this study....that's a head turner in my opinion. I wonder if that has ever happened before.