Do you want to post comments on the newspapers that misinformed about XMRV? These are some of the best ideas I've found...
Do you want to post comments on the newspapers that misinformed about XMRV? These are some of the best comments I've found written in blogs and posts. Share them as much as possible, and please make our voice be heard!
1) I was greatly saddened to see on May 31, 2011, Science "Editorial Expression of Concern" (EEC) regarding Lombardi et al (Oct 2009). It was a surprise to many of us that scientists found XMRV associated with CFS patients, though it was not the first time that scientists linked a retroviral agent to CFS patients given the severity of neuroimmune issues patients have and the fact that the most severe patients appeared to doctors as non-HIV AIDS. This action on Science part is "premature" to say the least. In fact, the EEC all but admits this outright: "Science eagerly awaits the outcome of these further studies and will take appropriate action when their results are known." I dare say you've already taken action (albeit of a purely inappropriate sort) in the form of this editorial and your request for retraction. Unfortunately, these actions will do little but cast a shadow of intimidation over the future of XMRV/HGRV research; a future that you simultaneously concede is still playing out. Was it your intention to foster intimidation and short-circuit the scientific process?
2) Science requested prior to publication that CFS be removed from the paper entirely. Whoever made this request was well aware of the politics surrounding CFS research and that Science would have to stand behind publishing new scientific findings for a controversial disease. I am disappointed to find that Science Magazine apparently does not carry enough weight on its own accord to do so, and can fall so easily to government and scientific pressures to bury evidence of an infectious retrovirus affecting not just CFS patients, but numerous other related neuroimmune diseases and cancer. Why are you trying to make certain XMRV has nothing to do with CFS?
3) While scientists see patients as a frenzied mass of believers who should be dismissed due to their lack of formal scientific training, all I see is the CFS community asking for proper basic science. The medical establishment has been cool to the Whittermore Peterson Institute, and the NIH has turned down all six researches grant applications they made last year. If there is no money, no more research can be afforded. Is that the purpose?
4) It is well-known that since the publication of Lombardi et al, its authors have been blocked from publishing further evidence in support of their original paper. The truism that "negative studies are rarely published" has been turned upon its head with respect to XMRV research, where those who have demonstrated an ability to find the virus are starved for resources and shunned at every turn, while those who demonstrate abhorrence toward genuine replication are lavished with funds and granted journal space without so much as the peer-review equivalent of a gentle pat down. Studies that prove their assays can only detect spiked plasmid to a certain degree of sensitivity without also clinically validating those assays are being given equal weight with positive studies. Why is the scientific community doing so?
5) None of these negative studies, including Knox et al, represents a genuine replication attempt. This has been made clear by Annette Whittemore's detailing of many (though not all) methodological differences in response to Science EEC. It should not need to be reiterated that no number of non-replication studies can ever substitute for genuine replication, especially when employing techniques as intricate as those in question. How is it that the world's premier scientific publication can be persuaded by quantity over quality, by tally over technique, by rhetoric over replication?
6) None of the authors of negative studies to date have proven the ability of their assays to detect virus in human clinical samples. In the cases of Knox et al and Shin et al, the authors clearly demonstrated the insufficiency of their assays against clinical positives. In all of these negative studies, only the analytical sensitivity and specificity of their assays was shown, and this was assumed to be sufficient. Needless to say this would not be sufficient for any assays intended for clinical diagnosis. As the issue here is to determine disease association with a retrovirus with a very low copy number, it is vital to prove that one's assay can detect viral nucleic acid sequences in their natural matrix and naturally occurring structures (circular DNA, pre-integration complexes, and integrated DNA), which are very different chemically and physically from plasmid spiked into water, placental DNA, or even blood.
7) Who were the peer reviewers of both Paprotka et al and Knox et al? Have any of the reviewers displayed prior public bias against the original Lombardi et al findings? Will Science grant the authors of Lombardi et al time and space to augment the findings of their original paper with new data?
8) Was Science made aware of the gross conflicts of interest between Konstance Knox and the WPI prior to its publication of Knox et al? If so, how did it deem these conflicts of interest acceptable and why were they not included as part of the publication? If not, will the publication of Knox et al be reconsidered with respect to this information? I sincerely hope that Science hasn't become a willful vehicle for vendetta.
9) Your statement indicates that you ask for voluntary retraction based on other groups not finding XMRV within an 18-month time frame. Is this typical? If this were any other virus associated with one or more diseases, would 18 months really allow for adequate research, especially in the case of viruses that prefer tissue over blood? It calls into question the true nature of scientific research and its ability to strive for objectivity without political motivations.
10) Dr. John Coffin, why is WPI/NCI able to find antibodies to XMRV if this is a matter of contamination? And if contamination is an issue, then why would both the Alter/Lo study and Lombardi/Mikovits study have only 4-8% positives in their healthy control groups? It takes only a rational, alert mind to understand that if test tubes and samples are contaminated with mouse DNA, it would be generously spread throughout other samples. And it can't be both a contaminant and not be there at the same time. Which is it?
11) These recent studies do not imply nor intend to prove, that all positive results reported thus far are due to contamination, and that XMRV in humans can be dismissed as an artifact. The most important remaining questions are: does XMRV infect and replicate in humans, is it a genuine human virus apart from being an easy and frequent contaminant, how did XMRV end up in humans and is XMRV infection associated with disease?
12) Schekman said: it's part of the scientific process for different groups to publish findings, for other groups to try to replicate them, and for researchers to debate conflicting results. Even if the original findings in a paper don't hold up, "that is an unusual situation to retract a paper under.'"
13) Why would Science ask to retract and put out an Editorial letter of concern before the Lipkin study is completed? Are you in a hurry because you are afraid that Lo and Mikovits will replicate their own work? Dr. Ian Lipkin said: "Calls to retract the paper at this point are premature. We need to let this study take its course, look at the data in a coherent fashion and figure out what it tells us. While interesting, the publications don't dissuade us from continuing our work."
14) We all know that science is full of cases where the original discoverer is discredited and marginalized to allow someone else to end up taking the credit (and making the money!) for the discovery. I'm afraid this is what we are witnessing here and I can even have a guess of who will end with the credit.
15) CFS has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link? None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, but the spread is rare.
16) Will you consider retracting your "Editorial Expression of Concern" in light of the numerous and varied criticisms leveled by myself and others?