Sunday, June 5, 2011

Got Some 'Splainin' to Do

I sent this email to Dr. Jay Levy, co-author of the recent XMRV-negative paper published in Science last week:

I’m a science reporter and blogger on CFS Central.  I read this quote by you on Bloomberg today [Tuesday, May 31], and have a few questions about it:

“When that paper came out I was totally surprised and suspicious,” Levy said today in a telephone interview. 
“Who knew there would be pressure on the government to do these expensive studies? I’ve never been around anything quite so dramatic and misleading and misunderstood for so long. There are financial ramifications, and medical and health ramifications.”

  • Why were you “surprised and suspicious” when the 2009 Mikovits study was published?
  • What do mean by “dramatic and misleading and misunderstood”?  Are you talking about CFS or XMRV or something else?
  • What financial, medical and health ramifications are you referencing?
  • On another note, the groups that funded your study are not listed by name. Sources have informed me that the HHV6 Foundation helped fund the study. Is that correct?
I would appreciate a response by end of business Friday.

Levy didn't reply.



  1. Others have described this as bizarre, I think it is very clear. Senior researchers spend nearly all their time on grants. He has survived many years of funding disputes. The last thing he, or other virologists, want is any new claims on shrinking budgets. You can get a similar response by trying to take dinner from a dog. Count your fingers after the experiment.

  2. Mindy, thank you for questioning Dr. Levy. He certainly does have some splainin to do. These statements are anti-science, imo.

    Anon, Since Dr. Levy is a retrovirologist, I don't think funding for HGRVs would have any negative effect on his research funding. But I am 'suspicious' of his 'misleading' statements.

  3. Mindy, Glad you wrote him. And please keep at him for a response. 'splaing indeed.

    He and his co-authors can do whatever study methods they want, that's fair, but all of them signing on to a conclusion that the XMRV/CFS link is dead and let's move on, is not a judicious scientific opinion that flows from their data.


  4. So what ME/CFS patients aren't worth doing major studies on? Levy justs want us to kick back and die quietly. Like we've been doing for at least 25 years that we know of. Sorry but we're not going down quietly this time around!

  5. So glad you asked these questions, Mindy. Levy needs to step up to the plate and answer them.

  6. What a totally bizarre quote. I was "surprised and suspicious" reading it.

    Thank you Mindy. The lame scientist who can fool you has not been born yet.

  7. How bizarre is the knucklehead commenting as Anonymous on June 5, 2011 12:16 PM?

    If that person is in science, please leave the field!

    "The last thing he, or other virologists, want is any new claims on shrinking budgets."

    In other words, how dare any new viruses evolve or new diseases appear in our time of shrinking budgets. Virologists, claims Anon., are too busy protecting their turfs and ringfencing their grant monies to want anything to do with scientific discovery or emerging pathogens and diseases. That new virulent and deadly E. coli strain in Germany? Pffftt, let 'em all die. We don't care. Same with SARS, treatment-resistant TB strains, and any other new pathogen or disease in the last 30 years, like XMRV and ME/CFS! We'll just put our head in the sand and punt.

    What a loser.

  8. Please remember that slamdunking the very doctors and researchers who have contributed to the knowledge base, and played critical roles in our understanding of this CFS-paradigm has consequences that cannot be undone.

    Make certain of the path you choose, for there is no going backwards on this one.

  9. Erik, what exactly has Levy ever done for us? All I think I remember was trying to find some foamy RV but never getting it in Osler's Web - was he involved with HHV6 or something else?

    I get people having an issue with people slamming Peterson but don't know enough about Levy to understand why anyone would defend/suck up to him, his statement in the media isn't exactly endearing.

    I am only 7yrs in & not in the US so would love it if you filled me in on what I'm missing. :)

  10. Re: "How bizarre is the knucklehead commenting as Anonymous on June 5, 2011 12:16 PM?"

    Your comment as Anonymous on June 6, 2011 5:46 PM is the bizarre one. The person was telling it how it is. That doesn't mean they think it SHOULD be that way; obviously the opposite is probably true.

  11. Jay Levy is one of the good guys. He has attempted to study CFS many times in the past and been shut down by politics and grants that never got funded. He may or may not end up being correct about XMRV. But his positive stance on with CFS goes back to the incline outbreak in the 80s.

  12. Anonymous, June 7, 2011 11:47 PM, wrote:

    "... telling it how it is.... obviously the opposite is probably true."

    "Probably" true? Really? You're having doubts about whether or not there's a problem here?

    Is that why you went into science, big guy, so you could studiously *NOT* solve scientific problems and medical mysteries of pressing need to society? And then defend the failure with pathetic bombast in a blog written by excellent Ms. Kitei expressly to defend and support the patients you've failed?

    It's not like science doesn't know it fails on multiple medical fronts either - witness movements in recent years to push the complacent incrementalism of the cancer research field to take more risks to pursue innovative avenues of research inquiry usually neglected or rejected by the turf-protecting, grants-ringfencing labs who've had a stranglehold on cancer research for decades (long before the current era of "shrinking budgets"). Or researchers in the Alzheimer's field boldly collaborating to advance their field in defiance of the dysfunctional secrecy of scientists who won't reveal anything of their findings until publication glory, no matter how much it hamstrings progress and discovery in their field as a whole.

    Have you somehow missed the memo from the ME/CFS community that failure to advance science and medicine for this disease is even more shameful and acute? If you have a problem with those hometruths, and can't seem to muster the humility to keep your cynical barbs to yourself on this blog, then you deserve all scorn in reply to your ill-considered, knucklehead words.

  13. Dr Peterson has been "the man of steel" since he STARTED the path to "CFS" with a phone call to the CDC about some clusters of illness in his small town.

    If Dr Peterson finds no fault with Levy's tecnique, let's at least wait to see if there is a reasonable explanation that can account for the discrepancy.

    Let's show the CDC that CFSers understand how science is really supposed to work.

  14. there's a lot of wisdom in Erik Johnson's comments.

  15. @Anonymous June 8, 2011 10:51 AM

    I have no clue what the hell you are talking about. I'm a patient not a scientist. Your comments are incomprehensible and out of context.

  16. THANK YOU are so right on!

    Do these people NOT know who Jay Levy IS? Perhaps they should educate themselves.

    I'm so disgusted by all this bashing, I can't see straight. To rip Dr. Peterson apart, Jay Levy, etc., is unbelievable. We end up the losers when researchers/physicians have had enough of the CFIDS community trashing them and give up on us, wanting nothing more to do with a patient group who does nothing but fight and act like "crazy people". It's disgraceful and downright nasty to treat those who have tried so hard to help us for years and years of their lives, giving up plenty, just to see this through and HELP US.

    I'm more than proud and honored to be a patient of Dan Peterson all these years. I would have died without him. He's totally unselfish and his patients come first in his life. Late night phone calls "help me".....coming into the office to do IV's on weekends, with no one else there..he does it. He stays in his office half the night with very sick patients, arranges for a ride for them and wheels them to the car, picking them up and putting them into the car.
    I been there and watched it AND been the recipient of his kindness. How many doctors do these people know who will do things like this?
    He's Marcus Welby, we actually laughed about it one late night as he carried a patient into a waiting car. He personally starts the IV's when no staff on weekends, brings you blankets, a little bell to ring if you need him, checks on you every 10 minutes, making sure you are comfortable "cozy up, want another pillow - I'll be down the hall doing paperwork, ring the bell if you need me". They don't make 'em like this anymore. He is far superior to any nurse I've ever had in starting IV's, he never misses, and it doesn't bother him one bit to play nurse.

    Please STOP these attacks on the precious few we have left.

    Linda Barossi

  17. How did this become about Peterson. This seems to be about Levy and some very biased opinions he had of the Science paper from the outset.
    I wish Levy had replied to the questions asked.


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