The Patient Advocate would like someone to tell him what is gained in delaying the release of this NIH study? The PA would like for someone to tell him what "review" of this study is necessary? This all was a crock of shit. The truth is that this is a delaying tactic - and the tactic would have totally worked but for a leaked paper and for the energetic intervention of a few persons acting on our behalf.
The Science study was published many months ago. In the real world (a world prior to our world), this research would have ignited great excitement and a serious effort to confirm or demolish it. This is what science is about - "Nothing upon another's word." The Patient Advocate would welcome a serious study disproving the association of XMRV with ME/CFS (if it is in the cards). (Who wants to chase chimeras?) The Patient Advocate wants the XMRV/CFS connection to rise or fall on its own merits. This is what science used to be about - rigorous competition, complex challenges, thorough study, confirmation, testing, testing again- and the ultimate excitement and benefit of success, should it be obtained. Today many scientists do not play this game. Instead we get a bunch of "new-fashioned" scientists trying to knock down XMRV for a bunch of hapless reasons. We live in a pathetic ego-driven age - the Age of Stupidity. Everything - every aspect in our culture - gets short-circuited. Like our banks, science too is leveraged.
In the past year, the CDC has asked, relative to XMRV, for additional testing of various studies and presentations. These bureaucrats hold the rest of us hostage. The CDC asked for more information and then sat on it, silent, brooding, and uncommunicative for months. Why would the CDC want to delay this science moving forward? Why did the CDC sidetrack the situation with absurd requests and deliberately designed studies to get zero XMRV findings?
The PA can give you a few goals of these obstructionists (to which you can add your own).
1.) It is very important (for the CDC and others) to put the brakes on ME/CFS research. Certain anti-ME/CFS elements do not like the direction in which things are going (for a variety of reasons). At the moment nothing can move forward in the application process for research grants. There is a seasonal grant application period and it has passed. Additionally, the WPI and others cannot apply for XMRV grants because this research is still "experimental". For the obstructionists, the longer the situation stays this way the better. To them, any delay is seen as a positive. What difference does it make to them? They can always think up an endless set of roadblocks. Their single desperately focused goal is to slow the momentum - and in the process to choke the money flow. In this regard, those opposed to ME/CFS research are succeeding quite well. The main target is the WPI - the Flashpoint.
2.) For the obstructionist it is important to slow down donor giving by generating innuendo, uncertainty, and then disinterest. The obstructionist attitude is this: Let's see how many ways we can muddy the water. This XMRV discovery normally would have propelled private research dollars flowing into the WPI and other private research. Perhaps even the federal government might have wanted to get involved? Instead, with the obfuscation, the money flow has not been forthcoming. This choking off of funds is an age old tactic. We saw it with Jonathan Kerr, in the UK. First he was given a little money, then he was given no money, then poof! - he is gone - disappeared.
3) It is important to the XMRV deniers to put a damper on the momentum of the WPI and particularly to tamp down the celebration of its new building in mid-August. The importance of the opening of this Neuro-Immune Institute cannot be overstated. This is a very big deal. This Institute is going to be a symbol - in concrete and glass -of dedicated and tangible ME/CFS research. Anything that can deflate the celebration of this private, philanthropic effort will be undertaken with whatever innuendo and distortion necessary.
4.) And then, for obstructionists, there are the "no discernible reason" reasons. These reasons are born out of the bureaucratic mind: boredom and/or Nihilism. These "problems/excuses" include "creatures of habit", knee-jerk reflexes, innate fear of superiors, their own guilt concerning past history with CFS, a natural attraction to idiocy, fundamental intellectual weakness, professional jealousy, "control issues", "power games", too rich a diet (from fancy dinners), working in a building with no windows - all the "modern" problems. Who knows what else? -you can add your own reasons. This is our government - at least at this level.
Despite all this, we can imagine this real and tangible symbol - the WPInstitute building - will be open soon, first for research and then for treatment - the latter in a few months. This will be the first institute devoted to research and treatment for Neuro-Immune illnesses. After this the WPI will take on an even more visible role as a clearing house for ME/CFS treatment and research. The WPI's calling card is action-oriented, expansive and generous research efforts. They want to share and export their research and testing and treatment. Is this too grand an idea? Are we not worthy?
Of course there is a subplot here - a rarely mentioned item or two. Certain people do not like the emergence of a dynamic new idea coming from a Podunk state like Nevada, and from a bunch of privately funded non-academic scientists. It does not conform to the rigidity of the average, non-thinking mind of academic science (Acanemia). To them it is inconceivable that something of this magnitude could emerge outside of the insular world of Harvard and Stanford. Additionally, to their minds, Reno is such a nowhere place. When was the last time that something important came out of this backward place, they ask? Thirty-five years in academia has taught me to expect anything - particularly in regards to low aspirations and infighting. Academia is a cesspool.
The CDC will hang on for as long as they can - until these "power boys (and gals)" are ground up into mincemeat. One can see the parallel to 1992, but this will not be a repeat of that year. At that time, very few people stood up - or not the right people - or not enough of the right people. And importantly, no one at that time could believe the CDC would act in the way that they did. This time it is different. This time everyone knows that the CDC is devious and lies regarding this ME/CFS matter. It is in the record. What the CDC does not realize, is that the world turns - and it is still turning. The fact that they are dragging their feet does not mean that others are dragging their feet. The work at the WPI and other labs goes on - and the struggle continues.
Not surprisingly the WPI is moving forward at a consistent and measured pace. Certainly having to defend themselves every step of the way is a distraction, but this is a tactic, a tactic of those who want to disable scientific research into ME/CFS. The WPI is a flashpoint, the most convenient and obvious target. They get this assignation because they are very aggressive and have done so much in such a short period of time. So far, the full significance of the WPI's work is not clear, and it is, at this moment, very much in doubt whether we will ever find this out. Personally, as an impartial observer, I want to know.
In the Patient Advocate's coming and going, he sees and hears many things. As a blogger, he is free to write what he wants. The Patient Advocate is not a journalist. The PA has no sources, except for my own wits. He does not need sources. One of the surprising (or not so surprising) things that he observes is various forms of the "Big Squeeze". At the NJCFS conference last fall, the PA sat bolt upright in his chair on hearing of threats aimed at Dr. Ken Friedman and his university job. The PA is fully aware of the stringencies dished out towards Dr. Sarah Myhill and two ME/CFS doctors in Belgium. Others, unnamed, are constantly under threat for their dealings with ME/CFS. The PA has learned to discern the meaning behind doctors talking in a whisper about ME/CFS. The PA has learned to lean forward in order to hear.
And then there is our ME/CFS UK friend, the researcher Dr. Jonathan Kerr. I have written about Dr. Kerr before, most recently in late May, when I saw, with my own eyes, "the writing on the wall". Recently Dr. Kerr "lost his job". This means one of several things. Either he was fired, or he was denied tenure (the same as being fired), or his contract was not renewed. Contracts are usually not renewed in academia because of "weak research". It is not difficult to deduce what happened here. Whatever the particulars, this is a deeply saddening and disturbing story. Dr. Kerr was a fine and objective researcher, working on the complex relationship of genes and ME/CFS. As a legacy we can be assured of one thing. Dr. Kerr's research in ME/CFS has come to an end. The conclusion that we can make is this. The squeeze that is often given is not a little squeeze, it is not a "friendly" squeeze. No it is the "real deal" - a squeeze that breaks all the bones in the hand, or breaks ribs and collapses the chest cavity. It is the "Big Squeeze".
A good number of months ago, several persons showing "partiality" to the XMRV research efforts were advised to take a step back. The bearer of this message indicated that the these research efforts and labs were going to be neutralized - the operative word is "taken out". You can believe this or not, but this is the essential matter of the struggle. You can nuance it this way and that, shade it however you want, but we are witnessing a very serious effort to take out ME/CFS research. It is worth mentioning that the WPInstitute is not really the issue. It is just the most obvious target - no matter what indiscretions that one wants to unfairly and hypocritically dump in their laps. (I always found these "tactical" criticisms of the WPI or Mikovits in particular to be an equivalent of blaming the ME/CFS patient for their illness.)
The Patient Advocate would like to comment on speculation that "the Patient Advocate is clearly tied into some of the action at the WPI". Not only is this an incorrect assessment, but it degrades the PA's place in the world. The Patient Advocate is an independent observer. The PA is "tied to" one thing only: the PA "is tied" to his daughter and to her betterment. With that in mind, the Patient Advocate determined very early on that the WPI was an unusual research effort, something new and remarkable that had surfaced in this little centrifugal world of ME/CFS. The WPI represented (and still represents) for him a consolidation of the best "hearts and minds" efforts in science as applied to ME/CFS. The WPI is a place devoted to scientific enlightenment. If the WPI is taken out, it is going to be a permanent setback. People involved in ME/CFS need to think very clearly about this situation. It is not a matter of agreement; it is a matter of clarity. Concerned ME/CFS patients and advocates have to connect the dots. It is crunch time.
All this is not a new story. But as Igor Stravinsky said, some things bear repeating. This is one of them.