Today I'm posting a bunch of comments I've been working on for weeks. This is my first blog post, which I'm using to post a large comment here rather than bloat up a forum thread.
For two years I have been mostly fence sitting on the XMRV/HGRV issue, I was not willing to devote too much time and effort into understanding it until the science was more established, because it may have not panned out and I had to focus on other aspects of ME/CFS instead. So XMRV turned out to be recombinant contamination and there are still some unanswered questions regarding HGRV? I'm still open to new developments, but many of us for whatever reason do not follow the science in great detail and we can see from our limited understanding that the situation is not looking too good in general, and I doubt it is all just politics or incompetence. It also seems that even the professional critics are still allowing the possibility of another (non-MLV related) retrovirus in ME/CFS.
As for "gelslidegate", when I looked at the slide from Jamie's blog and the original graphic from the 2009 Science paper, the two images in question looked essentially identical to me, all the same noise pattern etc, which is supposedly highly unlikely to occur by chance. I have experience with image manipulation but I'm not a virologist so I was waiting for further details to unfold, I was open to an alternative explanations like a sloppy mistake. Ruscetti later confirmed that they are the same images afterall, but there was a labelling error he attributed to "pressure" and patient codes having been changed since then. Another remaining issue is the azacytidine. I'll wait for what the Science journal has to say after completion of their investigation.
I don't feel any particular loyalty to WPI or Mikovits etc, but I wanted them to have a fair go. Screams of "FRAUD!!!" from the peanut gallery do seem premature at this stage (Oct 2011). Some people have wondered why others in the ME/CFS community have suddenly "turned" against the WPI and/or Mikovits in general, but as far as I can see it goes beyond that, we also have the BWG results, questions about the accuracy of VIPdx commercial testing, the partial retraction of the 2009 Science paper, the firing of Mikovits, the pending investigation by Science, not to mention the mounting (but still circumstantial?) evidence of contamination in the original paper. Feel free to accuse me of being ignorant about the reality of HGRV, I don't have the capacity right now to investigate every single claim from both sides.
[EDIT: I won't significantly alter the blog text, but I have since looked into the issue further and have become more suspicious about it, but I need to look further and won't make judgements when there are details about the situation still pending. See this post: http://forums.phoenixrising.me/show...mbardi-2009...&p=214217&viewfull=1#post214217]
I don't really want my money back from the WPI though, I donated to help speed along the outcome, whatever that is. I thought I would be disappointed for the ME/CFS community if XMRV and HGRV turned out to be a dead end, but the whole saga has raised the profile of ME/CFS in some way or at least help put it in the spotlight. We have more mainstream scientists interested in ME/CFS now, which is encouraging but still not happening fast enough. Anyway, however, then there is the issue of what Cort and others have mentioned, an unknown degree of losing researcher interest (of which some is probably hearsay and/or the result of self-fulfilling hearsay).
[EDIT: A lot has happened in the years since I wrote this post. Serious concerns have been raised about the WPI. I do want my money back now!]
Ecoclimber claims that "prominent retrovirologists" have judged the entire ME/CFS community on the alleged negative behaviour of a few individuals. These researchers sound a little judgemental then, although harassment and threats are serious so it is understandable why some are quite concerned. However, we as a community we have seen too many accusations of harassment without much evidence, along with the potentially libelous conflation of legitimate critique with criminal activities, although I tend to believe some questionable harassment is probably occurring because it is common on the internet these days and ME/CFS is no guarantee of sainthood..
Back to the existence of HGRV, on one hand we have proponents churning out arguments to support the existence of HGRV, and on the other hand a crowd of skeptics claiming all these are just bullshit borne from the Dunning-Kruger effect. I wouldn't be surprised either way really, I do not know whether the proponents are a reliable source of information, but solid arguments are just as important as qualifications. At the same time, a lot of supposed skeptics seem to make up assfacts whenever ME/CFS is discussed and I doubt many of them are generally more informed about cutting edge retrovirology than they are about more established aspects of ME/CFS research which they apparently don't seem to have much understanding of either. This of course doesn't take into account qualified scientists who may be commenting on the slide issue. I guess the BWG Q&A on Phase III would be a good starting point?
"Trust" is in short supply in the ME/CFS community when it comes to the medical establishment and controversial issues, so who do or can I trust? Unless individuals are willing to confirm and understand every detail for ourselves, either we can't comment on the situation with much confidence or at some stage we must commit an appeal to authority. I think that if the Lipkin study has taken aboard all that we have learned recently and still doesn't find an association with HGRV and ME/CFS, then as far as I'm concerned it is basically over for HGRV, not that I wouldn't be open to new evidence of course. But who is willing to bet their livelihoods that there is no HGRV in CFS? Suppose some of us start a family soon and it turned out that our partners or children just happened to become infected with HGRV and became ill years later, who would be responsible if we took the advice that HGRV doesn't exist in ME/CFS?
Like others I'm desperate for answers and HGRV is a simple hypothesis which could potentially tie together the unexplained abnormal findings in ME/CFS, but unless it is easy enough to treat, frankly I don't want to have a retrovirus and part of me would be glad if HGRV was a dead-end, originally having an OK tolerance I've become sensitive to medications and have seen my health decline because of them, so the thought of taking more serious and expensive drugs with the possibility of risking what limited function and quality of life I have remaining is frightening.
For two years I have been mostly fence sitting on the XMRV/HGRV issue, I was not willing to devote too much time and effort into understanding it until the science was more established, because it may have not panned out and I had to focus on other aspects of ME/CFS instead. So XMRV turned out to be recombinant contamination and there are still some unanswered questions regarding HGRV? I'm still open to new developments, but many of us for whatever reason do not follow the science in great detail and we can see from our limited understanding that the situation is not looking too good in general, and I doubt it is all just politics or incompetence. It also seems that even the professional critics are still allowing the possibility of another (non-MLV related) retrovirus in ME/CFS.
As for "gelslidegate", when I looked at the slide from Jamie's blog and the original graphic from the 2009 Science paper, the two images in question looked essentially identical to me, all the same noise pattern etc, which is supposedly highly unlikely to occur by chance. I have experience with image manipulation but I'm not a virologist so I was waiting for further details to unfold, I was open to an alternative explanations like a sloppy mistake. Ruscetti later confirmed that they are the same images afterall, but there was a labelling error he attributed to "pressure" and patient codes having been changed since then. Another remaining issue is the azacytidine. I'll wait for what the Science journal has to say after completion of their investigation.
I don't feel any particular loyalty to WPI or Mikovits etc, but I wanted them to have a fair go. Screams of "FRAUD!!!" from the peanut gallery do seem premature at this stage (Oct 2011). Some people have wondered why others in the ME/CFS community have suddenly "turned" against the WPI and/or Mikovits in general, but as far as I can see it goes beyond that, we also have the BWG results, questions about the accuracy of VIPdx commercial testing, the partial retraction of the 2009 Science paper, the firing of Mikovits, the pending investigation by Science, not to mention the mounting (but still circumstantial?) evidence of contamination in the original paper. Feel free to accuse me of being ignorant about the reality of HGRV, I don't have the capacity right now to investigate every single claim from both sides.
[EDIT: I won't significantly alter the blog text, but I have since looked into the issue further and have become more suspicious about it, but I need to look further and won't make judgements when there are details about the situation still pending. See this post: http://forums.phoenixrising.me/show...mbardi-2009...&p=214217&viewfull=1#post214217]
I don't really want my money back from the WPI though, I donated to help speed along the outcome, whatever that is. I thought I would be disappointed for the ME/CFS community if XMRV and HGRV turned out to be a dead end, but the whole saga has raised the profile of ME/CFS in some way or at least help put it in the spotlight. We have more mainstream scientists interested in ME/CFS now, which is encouraging but still not happening fast enough. Anyway, however, then there is the issue of what Cort and others have mentioned, an unknown degree of losing researcher interest (of which some is probably hearsay and/or the result of self-fulfilling hearsay).
[EDIT: A lot has happened in the years since I wrote this post. Serious concerns have been raised about the WPI. I do want my money back now!]
Ecoclimber claims that "prominent retrovirologists" have judged the entire ME/CFS community on the alleged negative behaviour of a few individuals. These researchers sound a little judgemental then, although harassment and threats are serious so it is understandable why some are quite concerned. However, we as a community we have seen too many accusations of harassment without much evidence, along with the potentially libelous conflation of legitimate critique with criminal activities, although I tend to believe some questionable harassment is probably occurring because it is common on the internet these days and ME/CFS is no guarantee of sainthood..
Back to the existence of HGRV, on one hand we have proponents churning out arguments to support the existence of HGRV, and on the other hand a crowd of skeptics claiming all these are just bullshit borne from the Dunning-Kruger effect. I wouldn't be surprised either way really, I do not know whether the proponents are a reliable source of information, but solid arguments are just as important as qualifications. At the same time, a lot of supposed skeptics seem to make up assfacts whenever ME/CFS is discussed and I doubt many of them are generally more informed about cutting edge retrovirology than they are about more established aspects of ME/CFS research which they apparently don't seem to have much understanding of either. This of course doesn't take into account qualified scientists who may be commenting on the slide issue. I guess the BWG Q&A on Phase III would be a good starting point?
"Trust" is in short supply in the ME/CFS community when it comes to the medical establishment and controversial issues, so who do or can I trust? Unless individuals are willing to confirm and understand every detail for ourselves, either we can't comment on the situation with much confidence or at some stage we must commit an appeal to authority. I think that if the Lipkin study has taken aboard all that we have learned recently and still doesn't find an association with HGRV and ME/CFS, then as far as I'm concerned it is basically over for HGRV, not that I wouldn't be open to new evidence of course. But who is willing to bet their livelihoods that there is no HGRV in CFS? Suppose some of us start a family soon and it turned out that our partners or children just happened to become infected with HGRV and became ill years later, who would be responsible if we took the advice that HGRV doesn't exist in ME/CFS?
Like others I'm desperate for answers and HGRV is a simple hypothesis which could potentially tie together the unexplained abnormal findings in ME/CFS, but unless it is easy enough to treat, frankly I don't want to have a retrovirus and part of me would be glad if HGRV was a dead-end, originally having an OK tolerance I've become sensitive to medications and have seen my health decline because of them, so the thought of taking more serious and expensive drugs with the possibility of risking what limited function and quality of life I have remaining is frightening.
