Kurt, I'm not sure that a campaign to do this would actually be fruitful or were you saying this tongue in cheek?
I certainly agree about not setting a vindictive precedent. Whether based on fact or not, the notion that we are all out for blood will not help the research continue.
I think Justin hit on something big, we really could and probably should go after some of the worst research, and try for retraction, or at least partial retractions. Why hasn't anyone thought of this before?
For example, in scientific research, when new information invalidates old studies, there can be retractions, partial retractions, or editorial comments. There have been recent retractions of studies on autism, pregnancy, vaccinations, and even global warming. This happens all around us, but seriously, we often maligned as patients because some really bad research has been allowed to stand.
Papers that could probably most easily be attacked for invalidity would be all those using the name ME or CFS, but working from a case definition that we now know conclusively did not rule out mental patients, or ordinary fatigue patients. Clearly going after every bad study would be impossible given our low profile, but just one or two wins might do a lot of good. Particularly for the people in the UK and AU who have to work with that crazy out-of-control 'everything is a psych problem' system where they still use electro-shock therapy for bipolar and depression patients (often barbaric and damaging to the patient).
I trust the integrity of Mikovits and Ruscetti and I prefer to wait until I hear more from them to clarify what went on in the BWG trial.
I would just like to ask where retraction of Lombardi would get us? And why some here want a retraction of this paper?
As I have said on a couple of other threads, even retraction of HGRVs/XMRV in ME will not resolve all the problems created by the discovery that these viruses infect humans, unless Silverman is planning a complete retraction of his prostate cancer findings.
So are Ruscetti and Mikovits just the beginning? Are all findings linking HGRVs to human disease going to be retracted?
And how safe will that be, considering that we are poised to release gene vectors based on these very viruses, with all the danger of recombination and spread into the human population that will entail.
It seems to me that there must be powerful financial interests at play which stand to loose massively if HGRVs are confirmed. So it is all the more important not to rush to judgement, but to wait and evaluate the science impartially, and that means all of it, not only the link to ME.
Personally I think that investigating other viruses will not take our cause very far, because none of them could be shown to cause all cases of ME. We will be left with the same problem of proving that ME is a biomedical disorder, the insurance firms will be able to refuse to compensate those sick, and we will be led round the circle of psychogenic explanations all over again.
Politically it is much better for us to support the HGRV hypothesis, until we can be certain that it is mistaken. We have no idea where this science may lead. We are looking into the unknown and other unexpected causes may yet emerge from the retroviral investigations. I find it incredible, given Dr Snydermen's data that a retrovirus is not involved.
Surely we as a community are politically astute enough to realise that some interests will massively loose out should ME be accepted as it is - as a biomedical disorder. How much would it cost the insurance companies in the US to pay back all the compensation denies to sufferers for their disability over the past twenty years?
We need to be alert to attempts to divide our community, to confuse us as to where our best interests lie.
What is so wrong in allowing the science to continue? Investigation of HGRVs is in its infancy. This call for retraction makes no sense and is highly sinister.
Wow, that is a really good but very complicated comment, you have shown (probably unintentionally) how the political desperation in ME/CFS has caused people to embrace what appears to be bad science. Here are some thoughts (sorry, I'm not trying to be contrary, you just have illustrated the problem so well it is hard not to be).
-In Mokovits/Ruscetti we trust? What has personal integrity or trust got to do with research results. If they were the only lab (socialism in science) then maybe trust would really make a difference. But we have a community of researchers and scientific consensus is the standard for determining whether claims are right. They may be trustworthy, and still be totally, completely, 100% wrong. Happens all the time in science, even Einstein was regularly proven wrong about some things.
-Full retraction is very probable at this point and is important when a study is obviously flawed. Even had there never been a single 0/0 study the paper would need to be retracted after the BWG study. How on earth did WPI get their PCR test results in the Science article when they could not for the BWG study? There is something wrong in their study, even if we can't prove exactly what happened (we will probably never know), we CAN show that the results do not stand up. All the 0/0 studies were NOT horribly flawed as some patient theorists propose, in fact they prove the point conclusively that there is not a single member of the MLV family of viruses in ME/CFS patient blood. That invalidates the WPI study as well. Anyway, data is the issue here, not being nice to researchers we like, or solving ME/CFS political problems (as important as that is)
-Yes, I believe all HGRV papers related to MuLV will probably end up being retracted eventually, because they are or will be proven wrong. They are based on contamination, cross-reactivity, or mistaken identity with HERVs, or some such problems. Even the Switzer prostate cancer study that found two MLV sequences in two different patients is likely a contamination problem, as they had earlier known contamination issues in their lab. (the CDC used Platinum Taq earlier in their study, don't know if that is published formally but it has been mentioned by researchers and is easy to confirm).
-Recombination is definitely a valid issue now and I expect most future studies of MLVs in human samples will be related to managing the risk of using lab viruses. But that is a more general issue and is not really an ME/CFS problem.
-No single virus has yet been proven to cause ME/CFS, of course that is obvious. There are different theories and each needs exploration. What WPI had just proven prior to their Science article was along the lines of multiple co-infections being important in ME/CFS (their virachip study showed this). I really wish they had not abandoned that line of research (I'll bet they wish they hadn't as well at this point). The CFSInitiative is likely to pick up on that thread and perhaps some good will come from that angle. But what proof do we have that ME/CFS is a primary viral infection? We know we have viral triggers some of the time, but not always. And many diseases have viral triggers but are not primarily viral in nature. There is a lot we don't know, but I do think we have to consider ME/CFS a regular disease and not just a syndrome. There will be a way forward for us without HGRV.
-You are right that XMRV was good for us politically. But that only works if it is true, which apparently it is not, at least not based on the research. So do we really want our advocacy to be based on a virus that nobody can find in our blood? I think not. We are in a deep enough pit already, and don't need to destroy what little credibility we have by insisting we have an infection that nobody can find in us. That would make us look like psych patients for sure.
-Why is it that people act like HGRV is the only possible retrovirus? There are thousands of known viruses and retroviruses, there might be others involved in ME/CFS, Dr Huber proved that HERV K18 is activated by herpes in ME/CFS patients, for example. WPI found HTLV in a subset of patients in their virachip study. There could be others. But to explain ALL of ME/CFS by a blood-borne retrovirus, that seems impossible to me given the epidemiology of ME/CFS. What is more probable is that something is damaging our immune function and therefore we harbor a lot of viruses. In fact that is proven by many studies. But there are many ways the immune function can be damaged, so we have a lot of research still ahead.
-Sinister? No, absolutely not, I think there is excessive paranoia in the ME/CFS community. Part of that is understandable, given the way we are treated. But this is not one of those situations. All these independent labs are not involved in any conspiracy against us. Insurance companies do not want to cover us, of course, but that is unrelated to HGRV, that is just ordinary life with ME/CFS.
