Since I've just spent rather more time than I would have wished reading through this thread, I'll add a few observations that occurred to me along the way, and hope that these points may help to frame a more respectful discussion.
1. It has been clarified that there are
two separate Lipkin studies under way: the 'final word on XMRV' and a more general search for pathogens in people with ME/CFS. It seems important to make a clear distinction between the two studies - although we don't even know (as far as I am aware) whether the same cohorts are to be used for both. The latter study is a very exciting opportunity for ME/CFS research, and long overdue - it should be exactly what we want to see happening, led by one of the world's top pathogen-hunters. But...until we see the results of that research, I'll reserve my judgment on whether the scepticism of some may in the end prove justified. Regrettably, the reality is that the assumption that Dr Lipkin is 'on our side' in this hunt is a theory that will need evidence if it is to be proven to all.
2. Many questions have been raised about the first study in particular, and some assertions made about
who will and who will not be involved in the XMRV study, but there does not appear to be much in the way of reliable, referenced information about those matters. Since at least one member has a good channel of communication with Dr Lipkin, it would be highly desirable if authoritative answers could be obtained to some of the questions raised - most particularly, who will and who will not be participating.
3. The member who claims to have had good email communication with Dr Lipkin, asking questions respectfully and receiving answers promptly, highlights a couple of key issues about effective communication. I think it is clearly true that
respectful communication and the asking of questions can be a much more effective approach to establishing a channel of communication than the angry issuing of demands. However, it is most unfortunate if the answers obtained cannot be made public, because other members have rightly pointed out that
there is no possibility of rationally engaging with claims to privileged information and appeals to the authority of that hidden information, and also because this situation means that efforts in asking questions are duplicated, and those whose communication is deemed insufficiently respectful are left in the dark, where their doubts and fears can multiply. More openness and transparency can solve many unnecessary problems of misunderstanding, so it would be great if the member who is in contact with Dr Lipkin could ask his permission to post the information obtained here, and to thereby establish an effective channel of communication with the patient community on Phoenix Rising and beyond. Even better, Dr Lipkin could even join PR and answer patients' questions directly here - perhaps that would save everyone a lot of time duplicating emails.
4.
Regarding 'Demands'. I half-agree with both sides of this particular argument. Actually, demands
do sometimes have a legitimate place in political discourse, and they are not uncommon, nor are they necessarily a mere childish tantrum.
However: for a 'demand' to be an effective or appropriate form of language - a terminology that will be treated with respect - it necessarily must be backed by some kind of power or an implied sanction that will be applied if the demand is not met. Thus the typical political groups that make demands are organised mass movements - united groups of workers or protesters who refuse to back down from their strike or protest until their demands are met - or groups using force or other leverage (such as terrorists holding hostages, or heavily-armed nations threatening weaker ones). We do not fit either of these patterns, and therefore it is not a form of language that is likely to be taken seriously in our context.
5. Finally,
regarding "stopping the study". I think that in this whole debate, there are a few unstated realities that are fairly clear to everyone. I think that everyone, realistically, knows the following to be true: (a) that the study will go ahead as planned regardless of what letter-writers say, (b) that Dr Mikovits will not be involved, (c) that all participants in the study will
almost certainly fail to find any XMRV in patients or controls, and (d) that this will not change the opinions of anyone who still believes in Dr Mikovits and the original XMRV findings. The situation we have come to now, it appears, is that: the only person (Dr Mikovits) who claims to know how to reliably find XMRV in patient samples will not be participating in the 'final word' study; Dr Mikovits' claims will
not now be properly tested under externally-managed blinded conditions; the detailed truth of exactly what the original Lombardi study did and did not find, and how any alleged contamination may have occurred, will
not be fully investigated; and therefore the doors will be left open for this controversy to roll on and on. All that will be achieved in the end is to completely isolate those who retain an interest in the role of HGRVs in ME/CFS, and to place them firmly outside the mainstream scientific agenda. I have stated repeatedly throughout this controversy that the argument will only be settled if and when the entirety of Lombardi et al's findings are investigated and explained, clearly and publicly, including a detailed understanding of how any contamination may have occurred,
and/or if and when the combination of an externally blinded study of Dr Mikovits' testing (which I argued for 2 years ago and which is clearly not now going to happen) and admission of error by Dr Mikovits satisfies everyone that the original findings were false. These always were the only ways to end this debate once and for all, and the latter in particular was a far simpler, more rational and cheaper solution than the approach that the scientific world has taken, but human and political factors prevent science from proceeding in such a rational and logical fashion, and I personally think that's disgraceful. In any case, anybody who thinks that Lipkin's study, without Mikovits' involvement, can 'end the debate once and for all' is deluding themselves. The problem remains the same: any number of people saying they are unable to find something does not conclusively prove anything about the one person (OK...I'm ignoring for now the likes of Hanson, Bieger, IrsiCaixa and the prostate cancer researchers) who says she can. So the bottom line: the study will go ahead, but without Dr Mikovits it cannot put an end to the controversy - all it can achieve is to effectively marginalise one side of the argument. Unless someone else does find XMRV, of course...I suppose anything's possible...
