Monday, October 18, 2010

NJCFS conference day - Dr. Judy Mikovits.

The NJCFS association puts on an annual conference day, often at the Sheraton in Eatontown, N.J,. in mid to late October. This organization is one of the best state ME/CFS organizations and their conferences are uniformly strong.

This year's NJCFS conference on October 17 was the best that the Patient Advocate has attended. It was also the most well attended as people came from all over to hear Dr. Judy Mikovits from the Whittemore Peterson Institiute give a lecture on the most recent research connecting XMRV (and its variants) to ME/CFS. They were not disappointed.

Dr. Mikovits gave a smashing one hour talk, rattling along at a high rate of speed, covering an astonishing amount of ground. The Patient Advocate has followed Mikovits' talk since 2007 and identified her very early on as a very special researcher. This talk was very hard-hitting, dense and delivered very quickly. It far extends the Patient Advocate's capacity to give this talk the justice that it deserves. Fortunately the talk was visually recorded and will be available on DVD in six weeks. Get ahold of it and watch it.

In the first part of the lecture Mikovits:

-drove quickly through the history of various published papers that establish the association of a family of gamma retroviruses with ME/CFS.

-went over familiar ground with the problems of the negative studies, and stated her arguments against contamination

-cited "greater sequence diversity than originally observed", stating that "Variation is our friend"

-twice cited Sandy Ruschetti's importance in this research, including a key role in isolating the virus,

-spoke of how hormones and inflammatory cytokines turns on the viruses

-speculated about reservoirs, where the virus hides, where it doesn't

-gave examples of teasing out XMRV with different testing devices.

-stated that "sample processing is everything",

-stated that the association of XMRV-related viruses is stronger in ME/CFS than in prostate cancer

-reiterated that the WPI is the only one who has isolated virus from ME/CFS specimens.

-talked about subgroup P

-indicated that X -variant and P-variant are two independent viruses

-found x and found p in individually cloned viruses

-stated that XMRV and its variants is not a mouse virus

-stated that this is not a recombination, but a new human retrovirus

In the second Part of the lecture she presented data on the XMRV work being done in UK. Along the way she mentioned:

-50 UK samples went to two independent labs, each tested multiple ways

-David Bell (recently retired) is working as a clinical consultant, presumably with the WPI

-ME/CFS is not a woman's disease

-Ruschetti cultured samples from Alter cohort and found x-variant in all of them

-found complete concordance between viral isolation and detection of antibody reactivity in UK plasma

-Lo's primers picked out negatives as positives

-Conclusion: found evidence of HMRV in >70% ME/CFS meeting CCC criteria

-1st generation testing will get better.

Finally Dr. Judy talked of XMRV-related virus in family and other illness

-presented Cheney's patient XMRV information

-showed family trees with illness association

-detection of XMRV in 16 of 17 families with neuroimmune illness

- "Methods matter!"

-HMRV research is in it infancy as much more research needs to be done.

This was an astonishing talk and its implications are far reaching. This gal has blown the lid off of ME/CFS research and it is going to be interesting to see where things go from here as the WPI continues to dig deeper into research (with unpublished papers) and at the same time reach out to others in an attempt to build a coalition to make inroads into this illness. The Patient Advocate, along with many others, sees the momentum coming out of this research and the possibilities and it is time to drop the detachment and give the WPI and its affiliates any help that one can, in any form. This lecture, along with others the day before, clearly point where things are going with ME/CFS research and treatment.

There are other reports on the internet on this conference. The Patient Advocate would recommend reading them to get a fuller picture.


  1. Thank you very much for everything you do. You, Mindy Kitei and ofcourse Judy give this bedridden girl the hope she needs to make it through the day. Today!

  2. Did Dr Mikovits mention that Dr Alter has also tested the UK 50 cohort bloods?

  3. Thank you, Patient Advocate. Your summaries of Dr. Mikovits presentation are really informative. I especially like "Ruschetti cultured samples from Alter cohort and found x-variant in all of them."

    Patricia Carter
    XMRV+, 24 years ME

  4. Chris, thanks for filling in some of the gaps that I forgot to mention on my FB notes. It was a pleasure to meet your wife and your son, though I'm disappointed I didn't get to meet you and thank you in person for all that you do. Here's a link to what I posted:

  5. What a fantastic talk Chris! Dr. Mikovit and the Ruscetti's are continuing to rapidly deepen their understanding of XMRV and pMLV's. thanks for the encouraging report.

  6. I'm now confused because I read on XMRV Global Action's Facebook page that "Frank Ruscetti and Rachel Bagni isolated virus from the Lo/Alter patients (I believe it was those that had a fresh blood draw - the 8 of 9 that retested positive) and what they found was XMRV."

    So did they isolate virus or simply culture samples and find positives? I was over the moon to hear they had also isolated the virus but this now seems unlikely....

    Thanks very much for all you do!

  7. First of all, Excellent work!
    Second: You said a couple of things in which I'd like your clarification:
    1) Dr. Mikovits said that X and P are two different viruses. Alter, on the other hand, said to Mindy Kitei that this is not significant because retroviruses mutate a lot, and gave an example that what we call HCV (Hepatitis C Virus) is not one virus, but a bunch of viruses similar enough to be called in one name. Did she go against it? Or did she just said that these are not exactly (100%) the same viruses/we don't know enough about the P-variant in humans yet (as Dr. Coffin said)?
    2) You wrote that she said "Lo's primers picked out negatives as positives". Can you tell us more? Because the one study that is out there until now and supports WPI's study is the Lo/Alter study... Sure it would not change facts (if someone makes a mistake than he makes a mistake), but still... And besides, I wonder how does anyone know that the sample is negative...
    Anyway, did she refer by that phrase to phase 1 of the blood working group, in which it was reported that WPI found 1 positive in what the managers of the blood working group called "a negative sample", and that Lo also found 1 positive in such a "negative sample", but when he sequenced that he found that it was part of the human genome and than he knew it wasn't positive?
    Besides - I know that the WPI was asked in that phase to perform a qPCR, which they haven't performed in their studies (so it doesn't say anyhthing about their studies) - was Lo asked to perform something that he didn't do on his study too?

  8. @Militant - those are my notes that XMRV Global Action reposted. I just checked my handwritten notes to be sure that I got it straight. Yup, I wrote 'Frank and Rachel ISOLATED virus from 8/9 Lo/Alter patients. It was XMRV'. I was half-dead, but if she said culture, I wouldn't have written 'isolated'. She also talked about the process of isolating a virus - spinning down a sample that has been added to graduated density gel in a centrifuge. The contents of the sample settle into separate piles, or bands , at different depths according to their characteristic densities.

  9. This is the most exciting news I've seen in awhile! Thank you so much for the update. I am looking forward to being able to purchase the DVD of the conference.

  10. Thanks for the clarification Xpos I understand now. Admittedly I was getting myself rather confused!! ;)

  11. "-Ruscetti cultured samples from Alter cohort and found x-variant in all of them."

    Connecting X and P together. Nice. Disappointed Lo and Alter primers didn't detect X, though.

  12. Thanks for this report, you do an excellent job with this blog!

  13. Thank you, consuegra! Your reporting is excellent, as usual.

    You wrote, "Ruschetti cultured samples from Alter cohort and found x-variant in all of them."

    Since Dr. Judy also stated that X- and P- variant are two independent viruses, I suppose the above means that XMRV was found in ADDITION to the P sequences Lo orginally found. I take it that the P sequences were NOT XMRV.

    So, the question is why Lo/Alter didn't detect that XMRV to begin with. Did they make the same mistakes as some of the other negative studies?

    It'll be great to view the DVD, which will hopefully clarify which test, exactly, researchers used to find XMRV in the Lo cohort.

    Thanks again, Chris. So glad you were able to go and pass on this info to us.

  14. Thanks for all your reports! (We met briefly at the IiME conference.)

  15. Thanks Chris. Great job.

    Fyi, another report has been posted at