Probably nobody is reading this thread anymore, but anyway, I just ran into the following posts and want to respond (and no, I was not avoiding them, just had other things going on and never read them before now).
Kurt says, in his post #75
Well knock me down with a feather! I've never heard this before! Is it true Kurt? Is there any substantiation available? I've heard that Mikovits worked in a yacht club bar before, but a vitamin salesperson is a new one on me.
Actually, I am doubly surprised, in that her career so far with Ruscetti in the NCI labs and gaining her PhD hardly seems to leave time for such commercial endeavours. Mind you, many students do a bit of bar work to fund their studies...
Leela, doesn't Kurt work on computer based training or some such?
Having some experience with MLM design and development, I can assure you that Kurt's statement may not be entirely valid. Mikovits may be assigned executive saleperson membership, but that doesn't mean she has even seen the product. Many MLMs stack their tiers and assign sales to dead memberships, to boost profits, or to optimise operational efficiencies etc. His statement can be interpreted as a slur and a strong indicator of his intent: it undervalues and trivializes the work Mikovits has done for ME/CFS and will continue to do.
Speaking plainly, it is difficult to understand why many members go out of their way to sink the boot into WPI and Mikovits, particularly when WPI's efforts have raised the profile of ME/CFS beyond what anyone else has been able to do in decades. Irrespective of whether WPI and Mikovits marketed themselves badly, or were sloppy, they did more for us than any other agency, political and research, by a country mile. And if sloppiness and bad marketing is what it takes to lift up this community, then bring it on. It is both transparent and petty when forum members fail to acknowledge this, or do so backhandedly, and regularly post on these threads just to denigrate researchers and spread negativity about promising research.
Yes this is true, JM is executive level sales, her photo is on a pharmanex website, so that would be something she would submit. I don't know what her sales volume would have to be for that company, but it is a successful firm, so probably not trivial as Rusty suggests. But my point was not to 'smear' Judy because I think taking side jobs, no matter what they are, is a respectable thing to do. I did side work when I was a researcher (before ME/CFS). My point was simply to show that she had marketing experience, and I was as surprised as you to learn this, because how would she have time? But also it answered a question I have had about why has she been so successful with patients. Marketing skills might explain part of that. Anyway I think this is a legitimate point to raise, it has been raised.
Leela, why do you care what my profession was? I do have a background in research methods but not virology, my area was interdisciplinary, including cognitive and systems sciences....but that background does not help much with the ME/CFS or this discussion, I study out the issues like most other patients here. And nobody has the upper hand, I have read posts by patients claiming to know biological sciences that contained obvious errors. So I check facts for myself, I read many studies and my conclusions are my own.
Not sure how you get from the first statement to the second statement. Most of what you are saying is very vague and is noteable by many omissions. If we are to educate specialists, then I suggest a few pertinant facts should not be omitted.
If we exclude the VP62 plasmid, then there is no evidence whatsoever that a well designed PCR could not find HGRVs. If the negative studies focussed on VP62, then they should be negated themselves. In the BWG it appears that the WPI and VIPdx did not used their regular assays, supposedly because of the constraints of the BWG. So their assays have not really been challenged. The WPI lab assays in particular have not been challenged.
Furthermore by only mentioning PCR, you neglect to mention that other methods, eg culture and serology, have not been challenged. Again WPI and VIPdx by necessity culture the virus, as they acknowledge it is difficult to find in the blood. All you are really saying is that so far the negative studies and the BWG have supported what WPI has been saying all along: the virus is hard to find in the blood and you need good assays.
There is no proof yet that the virus is transmitted by blood; there are plenty of other vectors: placental transmission, vaccination, tissue transplantation, semen etc have not been ruled out. As for blood transmission, there is evidence that indicates that HGRVs are present in the blood during amplification stages only, and retreat to tissue reservoirs, during non-amplification periods, so they may only be transmissable by blood during the amplification period.
Finallly, very strong models for a single retrovirus to cause different pathologies already exist. There is also new evidence that newly identified HIV strains, as yet unidentified by PCR, can have unique pathologies, thus providing an explanation for different subsets of ME. This behavior is also well characterised in MLV studies. In fact what the latest HIV study has found is that multiple pathologies, caused by multiple strains, can co-exist in a patient.
The PCR is what matters the most in the whole situation because that is where you prove the sequence and organism is what you say it is. Other tests are dependent on the PCR's validity to varying degrees. So when there is doubt about PCR, you stop there and work that out. You are repeating arguments that I have also repeatedly addressed, but that is all over the forum, so maybe you have not read my responses. The VP62 issue is about a strain and not a family. WPI tested the strains (gag, env), many of the 0/0 studies tested the family (pol). Thus the studies using VP62 pol gene have tested for the MLV family, while those using the VP62 gag or env genes have tested for the strain. This is an important distinction, between the genes, that means the VP62 issue is not as clear as might appear, if labs used its pol gene they should find ANY MLV strain.
I am not aware of any precedent for a blood-borne retrovirus like XMRV to be transmitted by any casual contact, that is probably why WPI ran a blood transfusion study, they knew they needed blood-borne transfer models. This is also true in animal RVs, they are generally blood-borne. Anyway, all the transmission routes you mention are valid for retrovirus, but not common in ME/CFS epidemiology, and that is a point I first raised two years ago, and have mentioned from time to time. It is a problem with the MLV/HGRV hypothesis in ME/CFS. I'm not saying there is no possible solution to that problem, just that a novel transfer mechanism would have to be discovered if this is the cause of ME/CFS.
