Many of the participants of the Blood Study group advisory committee meandered off to have a little dinner and feel good about themselves. Their self-assessment mirrors a comment overheard recently in a NYC coffee shop: "I feel good about myself and I think I do a good job." The rest of us go back to our life of illness or illness support. It is a grim life, made more difficult by having to go back to confront illness reality after a day with these FDA losers. It is this disconnect that is really irritating - the disrespect for this illness that individuals like Coffin and Stoye display publicly. They are playing their little games, disguised as science - and their successes in their careers come at the expense of patients. They do not give a shit. This is what I dislike. It is the contempt and the disregard and the ignorance of the consequences of their actions. It is in this way that they are modern people - self-pleasurers.
On this December 20th, a story from November 2009 has taken center stage and has become a "realization". A year ago a well-known cancer virologist was approached in the halls of the NCI by another virologist and advised to "distance himself from the WPI" - that "they (unknown elements) were going to take out the WPI". Today this story resounds more convincingly - and gives some credibility to the lies that have been circulating over the last few months.
The news today was not good for ME/CFS patients - not good for their health. For the moment the largest exposure (what is most suspicious) of these "smoke 'em out" retro-virology papers is the timing. These scientists chose to have their XMRV contamination studies released five days before Christmas, a time when ME/CFS patients are under the greatest stress of the year. ME/CFS or XMRV-related illness is a stress-related disorder of the first magnitude, and many patients, like my daughter, go down for the count during this time, and take weeks to recover. It is a very sad and painful time for ME/CFS families and friends. ME/CFS is a very nasty illness with a great fragility and unpredictability to it. These virologists, in their little ivory towers, can only think of these patients, as "complainers", resenting the "harassment" email activity of these desperate patients, now desperate for twenty-five years and counting.
It was quite noticeable in the conversation with Dr. Stoye the other afternoon that he has zero idea of the outlines or the seriousness of this illness - and no desire to find out, preferring to splutter and grimace instead. (Can one imagine that being true with Salk and polio patients?) Complete disregard can also be placed at the feet of the stuff shirt Dr. Coffin and the haughty and diffident Dr. Huber, neither of whom show the slightest knowledge or interest in the reality or character of this patient group. They are too busy talking about themselves, preening and mincing about.
In the unlikely event that these studies knock out the association with XMRV, we have a larger moral issues here - a moral issue parading in the name of science. These scientists in their "need to know" and "to win" are perfectly happy, in their deep ignorance, to trample on the feelings and spirit of this patient group. At the very core, they are an unfeeling, heartless bunch of bastards. Is this what science has become?
This disregard is only the most obvious example of the evil that is taking place now. It was obvious at the Blood Study Group Advisory meeting that there are larger, even unknown, issues here that various sides are contesting furiously - with the gloves off. At times it is difficult to determine if this is normal academic infighting, where scientists fight to the death over limited or non-existent stakes. Or whether, on the other hand, there are much larger issues here - issues of proprietary rights, influence, credit, power and, of course, money. For a long time now it has seemed that an aggregate grinding sound of anxiety and exacerbation has filled the hallways of university labs in the US and the UK over the WPI discovery. This has been written about before on this blog. Now comes the serious push to discredit ME/CFS.
This effort to discredit has been going on since October 2009 - and probably before. The first manifestation of "difference" - in hastily organized papers in the late winter of 2010 - was to knock out the Science paper. A number of people went down for the count in this exchange, including our friend Jonathan Kerr. These highly publicized negative worthless papers were dragged out over the summer. Finally the Lo/Alter paper was released and at this point things began to get serious.
Something big is at stake here and the struggle for control is not a friendly one. The opponents of the association of MLV-related viruses are intent on doing one of two things. The first possibility is to completely knock out and bury the association that a retrovirus could be attached to this illness and other unknown illnesses. The second is that they want to blunt the XMRV connection, bury it, and wrest control of the entire issue for themselves. From a scientific point of view the first option doesn't make a whole lot of sense. The ferocity of the fighting indicates that the second possibility is more probable. Large powerful elements want to wrestle this retroviral connection to neuro-immune and other illness from the WPI and their collaborators. The negative consequence of this for the patients of ME/CFS is not calculated in their bargains.
For the last few months, and longer, every step has been taken to isolate the WPI and starve them to death. All funding requests have been turned down based on the idea that the XMRV association is experimental. (Unfunded studies have to be completed to apply for funded studies.)
The release of these papers and its immediate uptake by the UK and soon the US press (think of our vaunted NY Times and of these "riled up" CFS people) indicates that the time was calculated for greatest exposure and to neutralize the level of the response. It was a good trick and one has to admire it for its connivance/deviance. These contamination studies made it very quickly into the major news media, especially in the UK. Someone was waiting for them - it was a set up.This was the hard take-out that has been expected for some time now. This is just another chapter.
The WPI has always been weak on the communications/public relations front. They are understaffed and poorly funded, particularly after opening their marvelous new building - an act that only further needled their enemies. At the moment the WPI is unprepared to strike back on this recent take-out, but things are going to change. As they gather forces and consolidate the means of aggressively pushing their agenda, the roll back will happen.
Let us imagine for a moment that the worst has occurred (the doomsday scenario) - that the XMRV association with ME/CFS has been broken and smashed. Let us imagine the unimaginable, that the UK whatshername and Coffin and Stoye have bested the valiant Dr. Mikovits. Is this the end?
We have to remember that it was the WPI that got us here. With all due respect for Klimas and Natelson and others, the WPI has gone farther and faster in their research - and without much institutional research money. Try to remember what it was like before the Reno conference in March 2009. At this point, a direction was set - entirely by the WPI and their then Medical Director Dan Peterson, and it has been a fast ride since then. Can anyone imagine that this will change? The XMRV was an unexpected gift - and it is a gift that is going to keep on giving. If it hadn't been for the October 2009 paper none of this additional broad-based research - Singh, Hansen, Bell, Cheney, Klimas, Montoya, de Meirleir - would have occurred. Whatever else happens the Whittemore Peterson Institute got the ball rolling, and now it is impossible to put the genii back in the bottle. As Dr. Alter said, if it is not XMRV, we have to find what it is. And then there are all the immune panels and cytokine studies. Soon it will be on to treatment trials.
Word comes late in the day of a comment on these five studies from the researcher/clinician Dr. Kenny de Meirleir (published on Merutt.wordpress):
“The contamination by mouse material was excluded in our study, that of Lo and that of Lombardi et al. We are not using PCR as a basis of the test but human prostate cancer cells that do not express RNase L so the virus from patient’s blood can grow in it. We also sequence the virus and I can assure you it is not mouse material. Governments and insurance companies are horrified by the idea that there is a new retrovirus out there that has infected 10 times more people than HIV up to date. My preliminary data show that the virus does not grow in culture anymore after Nexavir + GcMAF although the procedure was identical to the pretreatment culture. In the next months more will come from our side. A study with healthy blood donors, ME patients who got ill immediately after blood transfusion and ME patients who gave blood after they got ill will be published in the first half of 2011.
What these 5 are doing to the patients is a crime against humanity.
Kenny De Meirleir”
*a 1957 UK film starring Peter Sellers, where an impoverished backward nation declares a war on the USA hoping to lose, but things don't go according to plan.