Thursday, October 21, 2010

Further Clarifications to Mikovitz's Presentation at NJCFSA Conference

Much to my dismay, I have received more messages alerting me to other facts I got wrong or misunderstood or mistyped in my summary of Dr. Mikovitz's XMRV presentation at Sunday's NJ CFSA Conference.  Apparently, my mistakes are being discussed all over the internet. 

I've come to feel as if this blog is our own little, private place to communicate with each other - me and all of you who comment or send me messages - a place for friends to chat honestly and openly.  But, of course, nothing on the internet is private, and I should be more aware that anything I say here can (and will) be copied and repeated...forever.

So, in the interest of accuracy, here are some further corrections and clarifications:
  • WPI found antibodies AGAINST, not IN, the envelope protein of XMRV. (I told you I didn't understand what she meant by envelope!)
  • The first studies to detect XMRV (Urisman et. al) found partial sequences of XMRV (that is all that can be determined from PCR). WPI has since fully sequenced XMRV.
  • Xenotropic doesn't mean human, it refers to a virus that can grow in the cells of a species foreign to the normal host species. Other mammals can have the XPR1 receptor too.  However, in her talk, Dr. Mikovitz DID emphasize that XMRV and PMRV are found in humans but not in mice.  Further, I misstated that MLV's are not mouse viruses (I got the terminology mixed up).  In fact, MLV's are mouse viruses, but there is confusion about this because MLV-related viruses (e.g. XMRV and PMRV) are not MLV's and not mouse viruses.  So, XMRV and PMRV are not MLV's (not mouse viruses) but they are only MLV-related human viruses.  Follow that?
  • It was Tufts, not Johns Hopkins that tested 75 mouse strains.
  • Retroviruses are not "constantly changing", but may recombine with other RVs or mutate over time.
  • Cheney clinic is in Asheville, not Dallas.
 Once again, my sincere apologies for getting some of the facts wrong.  Please understand that this was a 90-minute long talk, Dr. M spoke very, very quickly, and as I explained before, much of the technology and terminology was new to me.  Copies of her slides were so tiny that I literally can't read them at all, so I relied solely on my own notes.

Thank you to those readers who have stood up for me in various public forums and who took the time to kindly help clarify these points.

(No comment to those who left me nasty messages!)


  1. Sue, don't let the nasties get you down. It's so easy for them to criticize, but they weren't the ones sitting for 90 mins with the fastest talking scientist in the west. I got a bunch of things wrong on my report too, but some kind friends just pointed out my errors and I made corrections. No biggie.

    So glad you were able to get to the conference. Cheers! Kim

  2. Thanks, Kim!

    I'm fine, though I was upset earlier. It just surprised me that other with CFS could be so condescending and nasty to one of their own. This is actually a big part of WHY I don't follow the discussion forums - I just don't have the energy to sort through all the emotions.


  3. Good grief, Sue, I am so sorry people would be so critical.
    Joel and I have a name for those who wait to pounce on others for a variety of reasons including a pastor and family we have experienced more than a few..alligators. I used to belong to a Lyme discussion group and quit pretty quickly due to all the drama.
    I am always amazed and grateful for the info you share with us. Thank you again.
    Give yourself a hug from your friends here!

  4. Renee -

    Thanks for the kind words and virtual hugs! Alligators is the perfect word! Yes, I just don't have the energy to deal with the drama.


  5. Haha! You didn't realize you were such a celebrity. For the record, none of those clarifications changed the way I perceived the information you presented. You certainly got all the important stuff right. Thanks again for sharing, and don't let them discourage you, because a lot of us in this private place are so grateful for all you do.

  6. I just want to echo what Xpos and Renee said. You're doing such a great job of keeping all of us updated. If people have corrections, why can't they be polite about it?

    We know these things shouldn't upset us but it's easier said than done. I was on a local NPR show out of Sacramento when the book first came out. The interviewer asked me a lot of questions about how I got sick and about Chronic Fatigue Syndrome. At the end of the segment, he gave out my website address. Shortly thereafter, I got an email from some guy saying he didn't want his tax dollars going to support an amotivational slacker.

    I can laugh about it now (e.g, does that mean everyone else is a motivational slacker??) but it sure stung at the time.

    Hang in there. We're with you and appreciate all you do.

  7. You did say that you weren't sure about some of the facts. It's not like you were publishing a paper! The level of vitriol never ceases to amaze me. In the early days I abandoned a fibromyalgia forum because of the closed minds of some of the participants. Hey ho. I guess this illness makes many of us very defensive. It's hard when you become the target yourself. Hang in, we still love you :-)

    PS thanks for your affirming comment on my recent post. Much appreciated.

  8. Thank you, thank you, thank you, everyone who commented here, for your support. It means the world to me and puts the negative stuff in perspective. I even feel a little silly for letting it upset me so much yesterday, but like you said, Toni, that is easier said than done!

    This is why I gave up on discussion forums long ago - emotions just run too high, and I don't have the energy for the drama. The drama in our own lives is more than enough! Plus, I discovered early on that anger and outrage hurts me far more than it helps.

    I count you all among my closest friends - thanks for being there for me!!


  9. I don't know why alligators need to point out everyone else's fault -- it must make them feel better on some level. But, Sue, even though I'm late to this party, I'm with everyone here -- you offer such great information and are such an inspiration to many of us -- keep it up!

  10. Anonymous1:12 PM

    Yikes! Sorry the drama had to get to you... it is very hard not to get caught up in it. People shouldn't criticize what you write as though you were claiming to be a professional health researcher. You make it abundantly clear that you aren't in that position, so people should listen to that.

    Take care! Maybe a short vacation away from the internet? We'll understand if we don't hear from you for a couple of days!


  11. First of all my friend, I am indebted to you for even TRYING to figure all of this out. I don't both with this stuff because I just can't make sense of it in my brain.

    I must have figured out something though cause I knew the mouse thing. :-)

    Thank you for making the corrections. I'm sorry you feet keep being held to the fire, but I'm proud of you for doing the right thing and making the corrections.

    Thank you again for all your hard work.

    I least got the mouse thing straight in this slow brain of mine!