Tuesday, November 23, 2010

Dr. Ian Lipkin and XMRV

The Patient Advocate was reading the NY Times Science section this morning when he noticed the front page article on Dr. Ian Lipkin. The PA had seen the online version yesterday but was pleased to see this in the real paper. The first question that came to the Patient Advocate's mind was - why this extensive profile of Dr. Lipkin and why now? It was only when the PA got to the last paragraph of the article that the PA understood what this article is about. Dr. Lipkin has been selected as our "big daddy" for the rough ride ahead. A few well-place telephone calls and Dr, Lipkin is given the highest exposure in the NYTimes. Someone has to do this job and Dr. Fauci of the NIH has selected Dr. Lipkin, who credentials are sky-high. It is going to be Dr. Lipkin's job to try to convince the rest of us that everything is "going to be alright" in this "virus thing" with XMRV and other MLV-related viruses and their association with ME/CFS, breast cancer, prostate cancer, etc. Dr. Lipkin will be the voice of calm reassurance. He will convince us that science will triumph, and that there is nothing about which to panic. We will be seeing Dr. Lipkin again very soon when the results of the blood working group phase II are made public. Then we will see him again when Dr. Ila Singh's research is published. We will be seeing alot of Dr. Lipkin. Get used to him.

Meanwhile Dr. Lipkin's real job will be to substantiate what has already been substantiated. Under normal circumstances (but for the CDC errant study) the Lo/Alter paper would have been accepted as a confirmation of the October Science study of Lombardi et al. But these are not normal circumstances. Because the CDC failed at their task, either diliberately or through magnificent incompetence, Dr. Lipkin's job will be to "reconcile the irreconciliable". So his tasks are two-fold - sustantiate the substantiated, and reconcile the irreconcilable. The first part will be easy. The second part less so. The Patient Advocate cannot imagine the explanation that will have to be invented for the second part - but one thing is certain - it will be a doozy.

Substantiating the Science paper will be easy. The Patient Advocate, or any semi-competant person, could do this job. It is a set up. Dr. Lipkin, using the right tests and having the blood of real ME/CFS patients (samples from Komaroff, Levine, Montoya, Bateman and Klimas and probably others) will find 80-90% of them positive for XMRV ( if not more). Dr. Lipkin will get another feather in his cap, and be a local hero - at least at Columbia.

Meanwhile, for the rest of us, the real heros will have been passed over, and the real scientific discovery neutralized. But for the hopeless failings of the CDC, the research into XMRV and it's association to neuro-immune illness would be sailing along. Instead the NIH is involved in the final solution for XMRV, which involves great delays which are not without consequences. This maneuver also allows a shift away from the real scientists in this XMRV association with ME/CFS - Dr. Vincent Lombardi and Dr. Judy Mikovits of the Whittemore Peterson Institute.

This entire situation is nauseating. (This has very little to do with Dr. Lipkin, who the Patient Advocate imagines is "top notch".) It characterizes the most lethal of academic prescriptions: create a tangle in some fashion, create uncertainty, create delay - and then bring in an outside high profile consultant - an expensive hired gun - to straighten everything out. This is obviously a desperate measure to "take control" of this issue. As with all "control issues", one thing lies in the background: venality and/or malice.

The Patient Advocate quickly fashioned a letter to the NYTimes this afternoon summarizing the situation:

"Thank you for your article on Dr.Ian Lipkin. Dr. Lipkin is obviously a remarkable researcher. It did not escape the attention of this reader that the gist of the article is left to the last paragraph. Dr. Lipkin has been hired by the government to straighten out the discordant research regarding the new human retrovirus XMRV in its association with ME/CFS. This is a set up. Dr, Lipkin has been put in charge of substantiating what has already been substantiated by the Lo/Alter paper of September 2010. This task, the outcome of which is entirely predictable, will be another feather in Dr. Lipkin’s cap. Meanwhile the NY Times has missed the main story. The article should have been written about Dr. Judy Mikovits and Dr. Vincent Lombardi of the Whittemore Peterson Institute who wrote the Lombardi et al in the October 2009 Science magazine. It was these scientists who did the original astonishing work in the association of the retrovirus XMRV with ME/CFS (and potentially other neuro-immune illnesses.) They are the real heroes of this unfolding disease drama."

The Patient Advocate wishes to point out the difference between overseeing a support study and doing original research. While running a confirmation trial takes some delicate skills, it is nothing like the intensity and creativity necessary to scope out a complex problem and go to the root of it. The former situation involves standing on the back of others, the latter involves standing alone. And yes there is a difference.

23 comments:

  1. Thank you for providing another first-rate article. Your insights have once again proved valuable.

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  2. Brilliant!!!! I applaud your work. I so look forward to reading your words... Thank you for illuminating the truth and standing up for those of us that are unable. I am grateful for your humanity! Elisabeth

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  3. BRAVO! Very succinct. Lipkin must know he is doing the dirty work for the NIH.

    We will support the WPI and Dr. Singh...they are the true pioneers and they are the ones with hearts for patients, not the followers.

    Your heart is obvious. Thank you.

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  4. A longtime constant lurker here. Thank you for that wonderful letter to the New York Times. I hate having to be called "Anonymous" but the wordpress registration is beyond my foggy brain. That said, I am meadowlark and SlowDescent on various boards and groups.

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  5. I think there's room for many heroes in the xmrv story!

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  6. Great analysis Chris, sharp as nails. You are so right, the real pioneering heroes are the Whittemore Peterson Institute, Judy Mikovits and Vincent Lombardi, and we won't let that be forgotten. Here in the UK the architects of our disenfranchisement are celebrating two decades of abuse of ME sufferers by our rotten ME policy. We hope to emerge from the Dark Ages soon.
    Keep up the good work, and many thanks.

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  7. As usual you write things down, with great insight. Thank you very much for your brillant reply to the NYT. We have to remind the world that it is thanks to the hard work of WPI, that xmrv is found.

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  8. I can see from your blog that you are preparing to go for the jugular. Good luck.

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  9. Thank you Chris, for this blog and the letter to the NYT. It is quite apparent to me how media is used to highlight what the government wants highlighted, but not to the mainstream public. Very well done n

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  10. As always, your insights are right on target. Thank you for clarifying what is going on with Lipkin and the US government.

    Is there anything we can do to support WPI to counter Lipkin's actions?

    Patricia Carter
    XMRV+, 24 years ME
    www.mecfsforums.com

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  11. Thanks for making it clear to those who read your blog and the NY Times what is really going on here and why. The WPI are the heroes here. Lipkin is being sent it to do the mop up work.

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  12. Thanks for opening our eyes!. Big hug from Spain.

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  13. A Patient Advocate is sort of like a student representative on a faculty committee. The Doctorate will give the impression of extreme knowledgeability. It is the parents of ill children who have money, energy,
    and motivation. If he can throw his energy into communicating with and bucking up this financial base who are eager to help in any way they can.

    Patients are, in the main, ill, exhausted, and living or charity or financial stipends, and we are too ill to ill to accept the pace and forget past and current research as is wanted by the pharmaceutical and medical corporate block. The more they keep us on drugs that don't work, the less real progress they make, the more repetitive studies they perform,
    the more pleased they will be by an under qualified "Patient Advocate" willing to tow their line.

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  14. Well done Chris. We all appreciate your efforts.

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  15. Wonderful analysis, eloquently written

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  16. Hey Mr. P.A. As Usual thanks for your prescient observations, and intelligent insights. My question is this: If Dr. Ian Lipkin is the nation's top VIRUS HUNTER, than why wasn't he sent a bunch of vials of blood from the EARLY CEBV (Chronic epstein Barr virus) victims like us from the mid 1980's? He was around San Francisco, when HIV was raging, and they were finding weird cancers like Kaposi's Sarcoma, and other illnesses alongside HIV that were killing off AIDS patients, and all of us CEBV patients were often bedbound earlier and longer than HIV patients with our chronic sore throats and swollen glands. If it looks like a duck and walks like a duck? There were close to a million of us out there so sick that we could barely feed ourselves. Why wasn't Tony Fauci, and Billy Boy Reeves looking for the TRUE virus causing all this mess back then? and why did they try to Kill Elaine DeFreitas's work instead of supporting her with a VIRUS Hunter like Dr. Ian Lipkin back then? as you describe so accurately, that a retroviral immunologist like Dr. Mikovits came in the back door and Dr. Silverman, both were searching for viruses in certain forms of prostate cancer...and actually found XMRV in so called "CFS" and M.E. patients almost by accident. It is the perseverance of Mikovits and Dr. Ila Singh, two WOMEN of unimpeachable integrity, who teased out and actually grew REAL virus, not just fragments...and later Dr. Alter of the NIH and Dr. Shyh Ching Lo (of gulf war veterans mycoplasma fame) to actually REPLICATE the work of Lombardi and Mikovits..and the government wags at the CDC soiled their underpants, they were so scared...and they took another six weeks to mess up the NIH results to make it look like they just found "FRAGMENTS" of MLV's, when they REALLY WERE ABLE TO REPLICATE THE WORK OF LOMBARDI ET AL!!! Now, it was actually, Dr. Collins, the NEW Head of the NIH who told the lazy Tony Fauci to get off his keister and put Dr. Ian Lipkin in charge, (30 years too late for far too many of us!) to see if Lipkin, with the backing of the entire medical establishment can tease out the same results of Lombardi, Mikovits and Singh! Only time will tell if the boys can catch up with the girls on this one!

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  17. Hey Mr. P.A. As Usual thanks for your prescient observations, and intelligent insights. My question is this: If Dr. Ian Lipkin is the nation's top VIRUS HUNTER, than why wasn't he sent a bunch of vials of blood from the EARLY CEBV (Chronic epstein Barr virus) victims like us from the mid 1980's? He was around San Francisco, when HIV was raging, and they were finding weird cancers like Kaposi's Sarcoma, and other illnesses alongside HIV that were killing of AIDS patients, and all of us CEBV patients were often bedbound earlier and longer than HIV patients with our chronic sore throats and swollen glands. If it looks like a duck and walks like a duck? There were close to a million of us out there so sick that we could barely feed ourselves. Why wasn't Tony Fauci, and Billy Boy Reeves looking for the TRUE virus causing all this mess back then? and why did they try to Kill Elaine DeFreitas's work instead of supporting her with a VIRUS Hunter like Dr. Ian Lipkin back then? as you describe so accurately, that a retroviral immunologist like Dr. Mikovits came in the back door and Dr. Silverman, both were searching for viruses in certain forms of prostate cancer...and actually found XMRV in so called "CFS" and M.E. patients almost by accident. It is the perseverance of Mikovits and Dr. Ila Singh, two WOMEN of unimpeachable integrity, who teased out and actually grew REAL virus, not just fragments...and later Dr. Alter of the NIH and Dr. Shyh Ching Lo (of gulf war veterans mycoplasma fame) to actually REPLICATE the work of Lombardi and Mikovits..and the government wags at the CDC soiled their underpants, they were so scared...and they took another six weeks to mess up the NIH results to make it look like they just found "FRAGMENTS" of MLV's, when they REALLY WERE ABLE TO REPLICATE THE WORK OF LOMBARDI ET AL!!! Now, it was actually, Dr. Collins, the NEW Head of the NIH who told the lazy Tony Fauci to get off his keister and put Dr. Ian Lipkin in charge, (30 years too late for far too many of us!) to see if Lipkin, with the backing of the entire medical establishment can tease out the same results of Lombardi, Mikovits and Singh! Only time will tell if the boys can catch up with the girls on this one!

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  18. Maybe it is the job of the patient advocate to remain positive in the face of impossible odds. Or at least that is my impression in reading this entry. Will this famous virus-hunter "approve" what others have found? There is another possibility, that he has been brought in to again pour cold water on the retroviral cause of CFS etc.

    And is being a virus expert the same thing as being a retroviral expert?

    I would not put any money on this outcome yet. The establishment, having gotten it wrong for so long, does not give up easily and admit their mistakes.

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  19. Thank you for this post.

    Every time I read about another shenanigan with the NIH/CDC, one question keeps coming to mind. Why? Why do they continue down this road? Why do they refuse to do what is right and necessary? To what gain do they continue to dismiss, disregard, and demonize all of us who live with this horrible illness day in and day out?

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  20. Great letter. Thank you. I consider myself an advocate for myself and others suffering with this. We all need to look out for each other.

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