NJCFSA Conference with Dr. Mikovits Oct 17th

Dr Mikovits' lecture at the NJCFSA on October 17th 2010, XMRV positive's notes
.by XMRV Global Action on Sunday, October 17, 2010 at 7:10pm.I'll preface this by saying that I had no sleep and I may have gotten some of these points wrong. I also forgot to get a conference booklet with Judy's slides, so I'm writing from memory. I didn't stay for the Q&A, so this is just from her lecture.

■Judy reiterated that there is NO evidence of contamination and highlighted that Bill Switzer's mtDNA test was used to rule it out as an additional check besides all the other verifications that were done for the Science paper.
■Evidence that HMRVs are associated with CFS is MUCH stronger than the association with prostate cancer because they have isolated the virus - something none of the prostate cancer studies have done
■One of the negative studies (Groom et. al) used a method to detect monoclonal antibodies to MLV Env proteins (gifted by Chesebro/Evans). This test recognizes all PMRVs except XMRV. Oops.
■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. THIS IS HUGE!!!
■Over 70 species of mice were tested by Coffin and none of them contained XMRV. This is clearly a new human retrovirus.
■Lo/Alter ran the WPI UK samples through their probes and picked up a couple more positives than the WPI found
■The WPI family studies were elaborated on. Judy showed family trees of a few generations - some have CFS, some Fibro, some lymphomas, ASD, one heart attack (11 yr old boy), some are not infected, some are infected but asymptomatic. Overall, it demonstrated a strong familial link.
■They've found HMRVs in people as young as one years old and as old as 88 years old.
■Judy estimates prevalence at between 10-20 million Americans infected. I think she said this was based on data from the Blood Working Group.
■Emphasis on the German study that found XMRV via nasal swabs in immunocompromised patients suggests transmission through respiratory secretions is highly likely. She also mentioned blood, urine, and feces again as probable reservoirs.


Oh, I should mention that there were many of our most beloved in attendance including Hillary Johnson, Annette Whittemore, Marly Silverman, Donnica Moore, and the Cairns family (Peter shot another video of Judy outside before the conference started)



I just remembered another point. The latest negative autism study used Cooperative Diagnostics 'drop o' blood on paper' test. They've been trying to get that thing published since last fall and only after the WPI presented their autism poster at the XMRV Workshop did they finally published this 'crap' study. Her words, not mine.

http://www.facebook.com/notes/xmrv-...r-17th-2010-xmrv-positives-notes/453519671796

 

Thanks Shannah, this is amazing info. I'm looking forwards to commentary from people on this board who have the knowledge to discuss it (not me, unfortunately!).

I think the above bit is very interesting but I am confused. I thought that XMRV was a retrovirus that mice have but which doesn't affect them. Have I got that wrong? I would feel embarrassed to ask such a simple question after all these months of reading about XMRV but I'm beyond embarrassment, all this biology stuff is way over my head! Is it instead the case that XMRV is in their DNA but not churning out copies or something?

 

Mice have MuLV's. XMRV is slyghty different from all known MuLV's. The X stands for xenotropic. That means it can infect other spiecies but not mice because those do not have the appropriate receptor.

 

Hi lansbergen - thanks for this - so if XMRV can't infect mice, is it actually surprising that Dr Coffin couldn't find it in the 70 species he looked at? Why would he even look?

 

There are a lot of different mice strains. He is looking to prove it is not in any mouse gnome. It is not in the 70 he tested.

 

yay I really needed some positive news... thanks.

 

Thanks!:Retro smile:

 

If this isn't a huge health crisis, I don't know what counts as one.

I feel like I am on the Titanic and most of the band is still playing.

*edit*
Oh and yes... thanks a lot for posting this!

 

Many thanks for this info

 

thank you so much , this was so badly needed after all the negative info recently .so glad i didnt waver ,came close yesterday . thank you for getting this on here so quickly. take care of yourself now.

 

Hi Sasha

I just wanted to make clear the reason for testing mice: if mice don't ever have this virus, how can they cause contamination? I am sure most of the most likely strains/species of mice to cause contamination would have been tested. This is yet more evidence that contamination cannot explain anything, that the findings are real.

All of this is unfolding in a very unsurprising fashion if XMRV is indeed associated with CFS, and pathogenic.

Bye
Alex

 

Thanks, Alex - this really is interesting stuff.

All this bioscience is well over my head (as I'm sure is obvious!) and I can't make a skilled judgement on XMRV - it looks very positive to me but I will be very glad when we're a few more months down the line and the major players have moved to agreement, whichever way it goes. The waiting is killing me!

 

This is great news

Given the strength of this info, did anyone there speculate how the heck naysayers like LeGrice or Hougton could say the inaccurate comments they did last week at cfsac??

 

Either because they didnt know or because this all istnt yet published. And in science, when something isnt published (and passed peer review) it doesnt exist..
Looking forward to those publications!!!

 

The best explanation to me seems because it's too soon for people to go crazy. And if it's really 10 to 20 millions, they probably would if they knew now. I think it's ok this way IF we can be sure the necessary work is being done and being done as quickly and as good as possible. I'm only nervous because you can't really know what's going on behind the scenes, if it's really it or not. But this was good info, thanks a lot.

 

Yes, this is just wow wow wow. Couldn't be better. Can't wait to see a Lo/Alter study with a bigger cohort from all over the USA or even all over the world.

Yes! It's great to have Lo/Alter on board. They can try to dismiss Mikovits (because she works for a private and small institute), even though they would not have a chance there neither, but never Lo/Alter. As long as we have them, McClure et al. might just as well pack their stuff. Bye, bye.

Great to hear that. I love the way she says things sometimes Like at the XMRV workshop when McClure said "we have done the serology as well" and Mikovits bent forward again and said "No, you haven't" or "No, we have" or something of that sort.

 

Thank you Shannah. You made my day (and Mindy Ketei). :victory:

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

Mikovits Lecture at NJCFSA Oct 17th by C. Cairns (the Patient Advocate)

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.
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Posted by consuegra at 9:08 AM

http://cfspatientadvocate.blogspot.com/2010/10/njcfs-conference-day-dr-judy-mikovits.html

 

Could a moderator include "C. Cairns" in the title after the word 'by' please. My finger slipped and accidentally posted before I could finish the title. Thanks

 

Speechless with admiration for her and her single minded work. Thank you Dr Mikovits.