Tuesday, January 4, 2011
David Tuller, NY Times, on XMRV
David Tuller wrote a very fine journalistic piece on ME/CFS in the NY Times today. The article first appeared online, and later in print in the Science section of the daily paper. Thousands of people will read this article.
An astute reader of this blog points out in a comment that the Patient Advocate has been critical of the coverage of the NY Times regarding the subject of ME/CFS. This is a correct statement- and the PA's criticism was well-founded. Today's article indicates a seismic event in the coverage of this story by the NY Times, and it is a very important positive shift in the balance of power in this "retroviral association" struggle.
The Patient Advocate's son Nicholas asks the essential question. Why did the NY Times decide to publish this now? It is an important question, but it is a difficult one to answer. At a minimum someone, somewhere, at the Times has gotten the idea that there is a story here. Certainly the FDA Blood Advisory panel recommendation must have elevated the NY Times' interest on the subject. Furthermore, it cannot be discounted that the December 20th sandbag operation left a bad taste in many people's mouths. Many people saw, rightfully, that this was an orchestrated effort to unseat the infectious disease association from ME/CFS. The PA surmises that this negative take-out operation was one bridge too far for many serious people. This article indicates a return to a level playing field for the pursuit of the science into this very complex, difficult and life-destroying illness.
The battle over XMRV or other infectious agents is not over, but this article goes a long way towards clarifying the issue. Many of the principles in this drama read this newspaper, for better or worse. The NY Times is the national newspaper, and many influential people get their information from it. Today's article is balanced, and it is fair. It was crafted by David Tuller in such a way as to mark the most negative comments halfway through, and then to proceed to discount or contest those very arguments. This gives legitimacy to the issues at hand - and leave the door wide open for further coverage of this drama.
The larger issue here has been going on for many years: Is ME/CFS an infectious illness? Is there a pathogen or set of pathogens that disrupt the immune system in a profound way, making these patients severely ill? This article goes a long way towards defining the larger shape of the pathogen association. As Dr. Harvey Alter said on December 14, "If it is not XMRV, we have to find out what it is." Dr. John Coffin has said essentially the same thing. The balance has been tipped towards establishing ME/CFS as an infectious disease - and towards finding treatments.
It is important that we not forget how we got here. There were rumors at the March 2009 IACFS conference in Reno that the WPI was onto something big. A few months later, in May 2009, the Patient Advocate remembers "the moment" at the end of the InvestinME conference. In response to a query, Dr. Judy Mikovits leaned forward and said, almost in a whisper, "Yes, we have found a novel virus not previously associated with this illness, and the study will be published in Science magazine". From that very moment, the world of ME/CFS turned.
With October 2009 Science paper, Dr. Mikovits and the Whittemore Peterson Institute established the association of a retrovirus - XMRV - with ME/CFS. Since then the Whittemore Peterson Institute has been under serious attack, and many people have been trying to knock them out. Some of this contention is the way that science operates, but much more of it is political in nature. The political aspect is unseemly, and unusually back-biting and negative - venal really, and laced with hatred. Through all this garbage, Dr. Mikovits and the WPI have held their ground, confident of their research, confident that there is an infectious viral component of this illness, causing profound immune dysfunction. They have gone on to establish immune signatures for this patient population - and the WPI's research continues unabated, although outside funding has not been forthcoming. This is a tactic to strangle this research. This too will be unsuccessful.
These consolidated and continuing attacks on the Whittemore Peterson Institute have taken their toll. These very few scientists and advocates who have advanced this XMRV, infectious disease research have taken a daily beating for over a year now. And yet, they are still standing. These people from this small, independent institute are tough - and they have proven that they can take a beating. Amazingly they are still the same gracious and generous people of several years ago. It is hard to watch this assault, but the PA's admiration for the constancy and persistence of this Institute's efforts has grown and grown - and their survival - the WPI's survival - will give other's hope. We will see more WPI's in the future. This is not 1992, and Mikovits is not in the position of Dr. Elaine DeFreitas. (Dr. DeFreitas was on her own with no way to defend herself.) The effort to demolish the WPI has failed, and, if anything, this NY Times article substantiates this. It is time to move on to more and broader research - and on to treatments.
It is important to recall what has happened in the last fifteen months. Because of the October paper, research into XMRV has sprung up in various places. ME/CFS and XMRV have been in the public eye like no other time in history. It is time to push. A momentum has been building and an inevitability has been settling in. While science is not moving fast enough for patients, researchers are becoming increasingly interested in retroviral association with various neuro-immune illnesses. Other research into ME/CFS has consolidated around the heightening of the XMRV association. For better or worse, ME/CFS has been in the public arena like never before and it will stay there now. All this can be attributed to the Science paper, and this has to be viewed separately from whether the specifics of this paper pan out or not. ME/CFS as an illness has been sprung loose, and this little private institute in Reno, NV smashed the lock.
This article today will help take the pressure off of Dr. Mikovits and the Whittemore Peterson Institute. Today was a good day for ME/CFS research - and a clear vindication of the research of Dr. Judy Mikovits and the Whittemore Peterson Institute. The subject of ME/CFS has been elevated to the highest level of news journalism, and this can only bring more brain power to wrestle with this illness. Neither Dr. Mikovits or the Whittemore Peterson Institute will object to this.