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.

13 comments:

  1. I too had gotten so upset over the New York Times apathy toward ME/CFS, most especially in October when they pulled a three year old story on ME/CFS out of their file and stuck it in their paper. This was after the meetings in Washington and the new term ME/CFS was used by NIH person talking to the panel. That three yr old article had been written by David Tuller.

    I was furious at the paper and him and wrote a letter blasting them and encouraged others to do the same. I found out the next day that Mr. Tuller was not working directly for The New York Times and did not know the editor had pulled a three yr old story out and published it.

    I felt bad for lambasting him and had everything retracted. However I was taught a good lesson. It is the editors that decide what is deemed reportable and sometimes the writers have no say over it. Therefore attacking a reporter personally can be unfair and the editors should recieve our wrath when news on ME/CFS is ignored.

    I was happy to see that Mr. Tuller was finally given the opportunity to write a factual report.

    The New York Times is read by people around the world. A good story on it's pages is priceless advertising to the disease and sufferers of ME/CFS.

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  2. Thanks Chris. An excellent big picture descriptor as usual. Do they give Pulitzers for blogs?

    I truly hope that this nytimes article is an indicator of the tide finally changing in the world of ME/CFS and other potentially XMRV-linked diseases.

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  3. Thank you Chris.

    Yes, we are getting somewhere. Thank you WPI, just keep doing what you do.

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  4. Thank you again and again, Chris. You are advocating for all of us.

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  5. It is good to read your optimism - helps keep all our hopes alive as we wait for help. One new issue that concerns me and I wonder if you would look into it and discuss - I just received an e-mail about joining a listserv for information from the NIH, and from the signature I see that the NIH has put us under "Women's Health" -

    Dennis F. Mangan, Ph.D.
    Chair, Trans-NIH ME/CFS Research Working Group
    Senior Research Advisor
    Office of Research on Women's Health, OD
    National Institutes of Health

    Why are we under "Women's Health" when this disease also affects children and men in large numbers?
    Thank you!

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  6. chris:

    do you know anything at all abt Dr. Dusty Miller's potential XMRV study. Apparently it is awaiting IRB approval. They want to use WPI XMRV+ patients and will duplicate Lombardi/Mikovits testing procedures.

    Lots of controversy whirling abt. Curious if u can provide any clarity.

    thanks for doing what u do : )

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  7. Thank you, Chris, warmheart, etc. for all the letters you wrote the NYT's about ME/CFS. So grateful!

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  8. Chris, many thanks for adding the 'Anonymous' option to your Comments sections. Many of us are not members of Wordpress, Google or other services, and are too impaired to figure out how to join or use them anyway. The unaffiliated 'Anonymous' option is a great help to many of us who are your devoted fans but were previously unable to comment here.

    Despite my ME-impaired memory, I seem to recall that David Tuller had authored other articles about ME/CFS in the NYT earlier this year and perhaps before. I am thinking that it may have been at the time of the embargo on the Alter paper or when that paper was finally released in August. In any event, I am certain (as certain as one can be with our swiss-cheese memories) that he authored at least one other very good ME/CFS article in print last year. I point this out because I recall some discussion on forums noting Mr. Tuller's background in AIDS reporting or AIDS activism, and remember noting to myself that he is one of the 'good guys' to be applauded for his insightful reporting on our disease and its politics (which I suspect gives him that 'deja vu' feeling that many of us with AIDS activism backgrounds have).

    My point is that NYT itself and its editors may be lagging in their responsible reporting for us, but excellent individual reporters, such as Mr. Tuller, should not be tarnished with the same brush.

    It remains a bit of an unexplained mystery why WSJ editors have embraced us by giving our fabulous Amy Dockser-Marcus such extensive room to report on breaking developments in XMRV, but I'm not complaining!

    Thank you, as ever, PA, for your terrific blog.

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  9. Thank you so much again and again, Chris and all the others that blog about this terrible disease and all the things going on around it!! I'm one of those patients that cannot be active in any way, simply too little energy. Recently I've started taking high doses of vit. D - I get into the sun very little - and now at least I have the energy to thank you for all your posts, I cannot express really how comforting it is to read them, someone advocating, and at the same moment and for me equally important, connecting me with 'the world', keeping me posted, giving me hope and company. Thank you so much!! (apologies, anonymous, because I'm rather internet-illiterate...)

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  10. I print your columns, fold them together and keep them right next to me. When I'm in despair I just read your articles to give me the some much needed hope to survive this disease. Thank you Chris!

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  11. We owe the PA a debt of thanks here: it's likely that the publication of this article in the NYT was a direct result of the PA's efforts to enlighten the editors after their recent misstep.

    Drew

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  12. Chris, many thanks for adding the 'Anonymous' option to your Comments sections. Many of us are not members of Wordpress, Google or other services, and are too impaired to figure out how to join or use them anyway. The unaffiliated 'Anonymous' option is a great help to many of us who are your devoted fans but were previously unable to comment here.

    Despite my ME-impaired memory, I seem to recall that David Tuller had authored other articles about ME/CFS in the NYT earlier this year and perhaps before. I am thinking that it may have been at the time of the embargo on the Alter paper or when that paper was finally released in August. In any event, I am certain (as certain as one can be with our swiss-cheese memories) that he authored at least one other very good ME/CFS article in print last year. I point this out because I recall some discussion on forums noting Mr. Tuller's background in AIDS reporting or AIDS activism, and remember noting to myself that he is one of the 'good guys' to be applauded for his insightful reporting on our disease and its politics (which I suspect gives him that 'deja vu' feeling that many of us with AIDS activism backgrounds have).

    My point is that NYT itself and its editors may be lagging in their responsible reporting for us, but excellent individual reporters, such as Mr. Tuller, should not be tarnished with the same brush.

    It remains a bit of an unexplained mystery why WSJ editors have embraced us by giving our fabulous Amy Dockser-Marcus such extensive room to report on breaking developments in XMRV, but I'm not complaining!

    Thank you, as ever, PA, for your terrific blog.

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  13. Anon said: "It remains a bit of an unexplained mystery why WSJ editors have embraced us by giving our fabulous Amy Dockser-Marcus such extensive room to report on breaking developments in XMRV, but I'm not complaining!"

    Remember that the Wall Street Journal is about MONEY and the companies involved in making money. There are a number of companies out there either involved or waiting to get into the XMRV/CFS arena once they see that BIG money can be made and what the US Federal health orgs will do next re: the Retrovirus, ME/CFS, etc.

    See Cerus and their INTERCEPT Blood System for platelets and plasma. The system has been used in Europe and the US military has provided CERUS with over $30 million in research money. Apparently CERUS technology is able to knock out the Retrovirus as well as the rest of the pathogens, parasites, etc in blood. IF the US military has spent over $30 Million (over years) to help this company get research done, then THAT is a company you pay attention to. And the Wall Street Journal would also be watching this company as well as others that may well make big money leaps from this new retrovirus. WSJ Is about money and they smell money in all of this. Not kind hearts and love for humanity, but MONEY.
    "http://www.cerus.com/index.cfm/ProductOverview/How_INTERCEPT_Works

    We are developing and commercializing novel, proprietary products and technologies that are intended to make the blood supply safer. We are commercializing the INTERCEPT Blood System for platelets and plasma in Europe, Russia, the Middle East and selected countries in other regions around the world. The INTERCEPT Blood System for platelets and plasma is not yet approved for sale in the United States. In 2008, we initiated a Phase I clinical trial for our INTERCEPT Blood System for red blood cells in the United States. The INTERCEPT Blood System, which is based on our proprietary Helinx technology for controlling biological replication, is designed to enhance the safety of donated blood components by inactivating viruses, bacteria, parasites and other pathogens, as well as potentially harmful white blood cells.

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