Where large sums of money are concerned, it is advisable to trust nobody. ~ Agatha Christie
Thank you to Kristin Loomis, for contributing her comment and for the additional information she provided privately. I have a better understanding of the HHV-6 Foundation’s policies and interests. I understand that retroviruses really aren’t on the foundation’s radar these days. I apologize for any inaccuracies, this time, and anytime; I do my best to fact check before publishing, and to limit any criticism that is directed at an individual to what can be verified on the internet, not gossip. I write each blog with the information at hand at that moment, intending to stimulate discussion. It is personal opinion, reaction to the events, public and private, not investigative journalism, though I wish a good investigative journalist would take it on. I’m getting mail suggesting that I interview people before posting blogs, but I have a day job again:). In any case, the information circulating that HHV-6 Foundation funded Knox et al is apparently incorrect. I invite anyone who feels they have been criticized unfairly to join us. Everyone needs to know the truth.
In your comment, Kristin, you said that you believe that Abbott funded Knox et al. I guess it’s logical to conclude that if Abbott appears on a paper, there is money involved, either because they funded the study and/or there is a patent and potential lucrative test involved. This raises a number of questions. I hope that anyone with information to answer these questions will contribute to the discussion as you did. I have never thought that there is a conspiracy in the sense that Peterson, Knox, Coffin, Stoye, Vernon, McCleary, the editors at Science, et al are having conference calls plotting our destruction. Each individual has their own reasons for doing and saying the things they have.
In my opinion, whoever funded their study, Knox et al have some pretty unsavory stuff to explain to the patient community. If I put the best spin on it possible, then the patients have been harmed by misguided acts. The publication of their shoddy work was unethical and immoral, in my opinion. The collection of the specimens in the first place for this purpose is inexplicable to me. Even if Peterson woke up one morning and said OMG, XMRV is all a big mistake, it is inconceivable to me that he no longer believes it is a retrovirus. So his desire to bury XMRV has to be about being right, ego and revenge, or money. Roche funding Valcyte? Hemispherx funding Ampligen? As I’ve said, he is welcome to respond. I will be happy to post anything he’d care to share. I would like to point out here that although I’ve had a lot of questions about Dr. Peterson for a long time, and have heard many stories, from protagonists and patients (always my most important source), I didn’t mention his name on this blog until the publication of Knox et al, which I took as a declaration of war on the patient community.
Abbott turns up all over the place, e.g. link; see Industry Relationships at the bottom of the page. They are clearly interested in XMRV. Their employees appeared as co-authors on negative and positive papers in Belgium, the positive paper being about a test for XMRV in prostate cancer tissue, not blood. When someone does a study, they know what they want to find; then they blind it to make it convincing, keep it honest. It makes no sense to do a study knowing at the outset that your test detects nothing, unless that is what you were trying to show in the first place.
From where I sit, there are many unanswered questions. It would be lovely to have no need of considering anything but the unfolding science, answering all of our questions in logical sequence, so everyone could take the high road; but that isn’t what happened. Thus my questions of the moment. Why and when did Abbott approach Konstance Knox to do a study on XMRV, when she had never published on anything but HHV-6 and owns a commercial lab dedicated to it’s detection? Why is Abbott’s funding of Knox et al not disclosed? Why would Abbott want to publish a negative detection study? Who is Graham Simmons and what is his stake, as he appears on negative, equivocal and positive papers? He works for a business entity involved in transfusion science and has a teaching appointment at UCSF, as does Jay Levy. Where do Roche, manufacturer of Valcyte, and Hemispherx, manufacturer of Ampligen, fit in to all this, since it seems likely they are a piece of the puzzle as well? What else do these people/companies have waiting in the wings? Intellectual property laws support a unique patent. Who put pressure on Science to rush Knox and their EEC to press when they did? When did Dr. Peterson collect the specimens for Knox, and what was his relationship to the WPI at the time? Did he inform everyone of what he was doing? You can’t get into anyone’s head. In the end, only the Shadow knows. But facts, actions, dates can be verified.
Nobody wants to have anything to do with CFS, except the WPI (and the CAA, with their peculiar spin). It’s common to hear that this or that researcher is sorry they got involved in CFS, because the advocacy community is becoming so strident. I’m not sure what the answer is. Polite hasn’t gotten us anywhere, as witnessed by the useless money that’s been spent on the CAA over the years in their pitiful attempt to validate the illness scientifically. If that had worked we wouldn’t be confronted with the psychiatric community wanting to label us with “CSSD”. The CAA too is free to respond in any way they like; the comments on this blog aren’t moderated.
ME/CFS is of retroviral origin, as is ASD, in my opinion. Read the HIV and animal retrovirology literature, much of which is referenced in previous blogs. It’s all there, plus the methylation defect and mitochondrial issues, covered to a large degree in the HIV literature, that were making up the bulk of my reading until the recent salvo was fired. The parallels are obvious. Nothing we’ve ever had to work with as physicians comes even close as a workable model to provide us with an approach to treatment, with a chance of healing the patients, forgetting about whether XMRV is the major player or not. For an individual to take any action at this time which has the effect of shutting down research into the retroviral origin of the disease is a crime against humanity.
Nobody is saying that the associated, opportunistic infections seen in ME/CFS aren’t important, anymore than Pneumocystis is unimportant in AIDS. It is exactly analogous. In this case, there may be interaction between viruses. Activation of latent viruses may benefit the underlying retroviral process, turn it on if you will. Another possibility is that any persistent infection causes downstream inflammatory changes that favor activation of provirus. The research into how retroviral etiology explains CFS pathophysiology needs to proceed, even before everything is sequenced and proven, even while XMRV’s defendants are being raked over the coals. Everyone involved knows it’s much bigger than whether individuals get discredited or laughed at. Scientists and doctors are much the same when it comes to fear of ridicule restricting their abilities to fulfill their prime directives.
In the end, science will tell us who is right, irrespective of personalities, unless the work isn’t done at all. Although I look forward to the results of Dr. Lipkin’s study, and from what I have read and heard, he is worthy of the respect he has been proferred by being put in charge of such crucial work, it seems wrong to me that it all rests on one man’s conclusions, or the ability of a couple of scientists to flawlessly reproduce their work, though they will certainly try. Maldarelli, Lipkin, XMRV Blood Working Group. That’s not much for a million sick people. When John Coffin declared XMRV dead, he said it could be another retrovirus. Is he looking for it? Why is the federal government going to let this go another year, waiting for a ruling on one virus, before considering the bigger questions? It needs to be studied as an enormous health crisis, whatever the outcome of the work on XMRV. If it were anything other than a kangaroo court in session on a federal level, the work would be a priority, with our Center for Disease Control finally trying to do some controlling of our disease.