why is there no new xmrv news from wpi?

[Navid]

hi

the original announcement from wpi re: xmrv was on 10/8....since then there has been none to very little info from wpi. i've seen dr. donnica on oz, read dr. klimas speech, read dr. cheney's and bell's views....but why has there been no more info from wpi...

when dr. mikovits speaks on 1/22 will some new info be presented regarding testing and treatment?

i know patience is a virtue...but i'm not that virtuous.

oh yeah....also a couple of weeks ago there was a post that alluded to some info coming from dr. kenny de meirler (sp?) regarding test results and treatment....has anyone heard anymore?

thanks, lisa

 

[Dreambirdie]

Good question. What's up with that?

 

[George]

Some thoughts

I have no ideal what the real answer to the question is but I have some thoughts that might be useful.

If I understand the time line correctly the WPI spent Feb/Mar of 2008 testing stored samples for XMRV. They hit the jackpot. . .

so in April and May they talked to Dr. Silverman and others about putting together a paper for science.

In June and July they pulled in 320 brand new patients and controls and did the actual study.
At this point the NCI sat up and took notice of what was going on and had a conference regarding blood safety.

August and September they went back and forth with Science not only reviewing the paper but arguing the point of keeping the CFS association in the paper. In September the NCI also awarded money for continuing studies on XMRV in CFS patients to the tune of 1.6 million in a joint effort to Dr. Mikovits and Dr. Kerr (so they must have taken some time to write up a detailed study proposal )

October the paper was released. Dr. Mikovits gave a talk at the Univ in Miami that month,(which was embargoed by HHS???) The CFSAC meeting happened, Oh and the CDC started their replication study.

By November the only lab in the world, VIP Dx ,set up to start testing the thousands of individuals and clinicians who wanted to test either samples or patients. Dr. Mikovits gave another talk at the University of Pacifica??? (also embargoed until others had had a chance to publish) In addition to all that there was the Department of HHS quietly forming a task force with a variety of jobs including checking the blood supply, and finding out exactly what percent of the population is infected. Later they'll try to figure out if XMRV actually does anything.

December I think Dr. Mikovitz might have taken a couple of days off, maybe (grins) But by the end of the month she was booked for another talk with streaming video on the web to be done on January 22nd via ProHealth.

Now as a PWC every day to me is like three days back in the normal world. So for us PWC's it's been like 9 mos with nothing new on the horizon. (big grins) But for the Doctors at the WPI I would imagine they are fielding calls from Dr.s all over the world. They are writing study proposals, getting funding, and in their spare time actually doing some lab work and all of this in only a few months.

Right now there are something like 13 studies going on around the world, that we know about, There are probably hundreds more going on that we don't know about. XMRV is the next big thing. It's the new HIV, it has exciting potential to be if not deadly; at least major misery making. Virologist around the world may not care or know anything about CFS but they are hot on the trail of XMRV.

It's coming, hang in there.

 

[Samuel]

hi

the original announcement from wpi re: xmrv was on 10/8....since then there has been none to very little info from wpi. i've seen dr. donnica on oz, read dr. klimas speech, read dr. cheney's and bell's views....but why has there been no more info from wpi...

Hi Lisa,

Embargoes? A journal might have told them "you can't talk about it because we want people to hear about your paper from us first".

Strategy? They might want to have peer-reviewed stuff out first.

Caution? They might have results that are taking up all their time and want to test it 5 different ways the way they did with Lombardi et al. 2009.

Yes, it is hard to wait! What do we do in the meantime? Take part in advocacy efforts (ALWAYS necessary)!

Samuel

 

[determined]

science is a process

I too am eagerly awaiting news...not sure what I want to hear, not sure how I want my test (when I get it) to turn out.

George, you have a very good understanding, it seems to me, of the process called science. These are very exciting times, but the process plods along. If XMRV causes CFS, I believe it will be revealed. When? I can't even guess.

 

[kurt]

I have no ideal what the real answer to the question is but I have some thoughts that might be useful.

If I understand the time line correctly the WPI spent Feb/Mar of 2008 testing stored samples for XMRV. They hit the jackpot. . .

so in April and May they talked to Dr. Silverman and others about putting together a paper for science.

In June and July they pulled in 320 brand new patients and controls and did the actual study.
At this point the NCI sat up and took notice of what was going on and had a conference regarding blood safety.

August and September they went back and forth with Science not only reviewing the paper but arguing the point of keeping the CFS association in the paper. In September the NCI also awarded money for continuing studies on XMRV in CFS patients to the tune of 1.6 million in a joint effort to Dr. Mikovits and Dr. Kerr (so they must have taken some time to write up a detailed study proposal )

October the paper was released. Dr. Mikovits gave a talk at the Univ in Miami that month,(which was embargoed by HHS???) The CFSAC meeting happened, Oh and the CDC started their replication study.

By November the only lab in the world, VIP Dx ,set up to start testing the thousands of individuals and clinicians who wanted to test either samples or patients. Dr. Mikovits gave another talk at the University of Pacifica??? (also embargoed until others had had a chance to publish) In addition to all that there was the Department of HHS quietly forming a task force with a variety of jobs including checking the blood supply, and finding out exactly what percent of the population is infected. Later they'll try to figure out if XMRV actually does anything.

December I think Dr. Mikovitz might have taken a couple of days off, maybe (grins) But by the end of the month she was booked for another talk with streaming video on the web to be done on January 22nd via ProHealth.

Now as a PWC every day to me is like three days back in the normal world. So for us PWC's it's been like 9 mos with nothing new on the horizon. (big grins) But for the Doctors at the WPI I would imagine they are fielding calls from Dr.s all over the world. They are writing study proposals, getting funding, and in their spare time actually doing some lab work and all of this in only a few months.

Right now there are something like 13 studies going on around the world, that we know about, There are probably hundreds more going on that we don't know about. XMRV is the next big thing. It's the new HIV, it has exciting potential to be if not deadly; at least major misery making. Virologist around the world may not care or know anything about CFS but they are hot on the trail of XMRV.

It's coming, hang in there.

Good summary George. I just want to make some small corrections to your timeline, then some comments.

VIP Dx was not actually the first commercial XMRV test on the market, that was Cooperative Diagnostics, a company that specializes in rapid test development, and has an impressive technology in place for that purpose. They developed their methods for the govt, to help with biowarfare testing, so this was just business as usual for Cooperative.

Secondly, while WPI was supposedly hot on the trail of XMRV in the Spring of 2009, they presented a paper that reviewed their virachip study, and did not even mention XMRV as a finding on that study! In fact, both Mikovitz and Peterson made statements to the effect that a group of HHV co-infections was the probable cause of CFS. At that point I don't believe any embargo would have been in place as the article was not written yet, the study was not even completed. So why no mention of XMRV, and why the statements that HHV causes CFS?

Embargos are normal, that has little to do with XMRV being 'hot', but simply is business as usual for scientific journals. IF you want something published in Science or Nature, or a top journal like that, you will be embargoed from releasing information until after publication.

Personally, I think we have not heard much more about XMRV from WPI because there is nothing new to say. Until replication studies come in and the scientific debate starts there will be little news. And the scientific debate has hardly even started, but we should hear something eventually, if outside researchers submit rebuttals or comments to Science, WPI can either answer those or sit on them for awhile. The Jan 22 presentation by Mikovits will be interesting...

Anyway, at this point I do not WANT to hear anything more from WPI, rather I want to hear from other researchers and scientists, after they have had a chance to really evaluate the XMRV study and try some replications of their own.

 

[Navid]

thanks...this is why i like this forum

Thank you wise people.

now that my anxious brain has these facts/thoughts to chew on for awhile i feel better.

i had forgotten about the 2 embargoed speeches from dr. mikovits.

i too feel like everyday is at least 3, sometimes 5 days..when the news was first announced i was so excited and ready to try any new treatment they proposed....now like many of you have stated, we have to wait for the wheels of science to turn.

also, i hope noone thinks i believe wpi has been doing nothing during these last few months...i was just curious why we were not getting any more concrete info....obviously the embargoes are a big factor.

thanks again for calming down my impatient brain : )

warmly, lisa

 

[SickOfSickness]

I agree with you, every day feels like multiple days. I always thought that was something abnormal about me. I think it's related to illness and brain fog, and not simply impatience.

 

[leelaplay]

Thanks again for calming down my impatient brain : )

warmly, lisa

Hi Lisa I know I know - were all so impatient. Have you seen the 2 threads about Dr Mikovits up-coming live-stream talk on Jan 22? The first has the link where you can submit questions that she may choose to answer.

by oerganix


by Quilp

 

[CBS]

Lots of stuff!

My understanding was that WPI first submitted the XMRV paper to Science in Spring (sometime between January and late February). Don't forget that over the summer (June? - after the paper had been submitted and some of the initial review was complete) there was a meeting in SF of many retrovirologists to coordinate the first round of replication work and then another meeting in Cleveland on November 11th. All of that AND Dr. Peterson in his presentation at the CFSAC (10/29-30) reported in his Powerpoint that XMRV was found in samples from NC & FL by the NCI and Cleveland Clinic, apparently independent of the WPI.

I went to HHS.gov and searched for XMRV. Two Powerpoint presentations came back. Both were brief and appeared to be the work of Dr. Peterson. There were a few bits of information of which I was not aware. First, one appeared to say that the NCI and CC had confirmed XMRV in CFS patients outside of the WPI cohort (slide #2 - http://www.hhs.gov/advcomcfs/meetings/presentations/peterson_1009_pt4.pptx).

The other ppt restated what I have already heard in that the WPI had not found the same retrovirus as DeFritis (see notes on slide #4 - http://www.hhs.gov/advcomcfs/meetings/presentations/peterson_1009_pt1.pptx).

Here is the link to all six Dr. Peterson ppts: http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html.

I found that the fifth slide in the sixth presentation was also interesting regarding ampligen ("Possibility is that some patients dont tolerate ampligen well which has been correlated with high levels of IFNa.").

Here's the link to all of the ppts from the CFSAC: http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

I've never seen this much happening so quickly in CFS or any other disease.

Hang in there!

 

[Jimk]

Thanks for these links. I was desperate to find his slides. The actual links didn't seem to work but got me to this : Peterson ppt Did I get the right one?

 

[FernRhizome]

Thanks for everyone's thoughts on the current "silence." It is helpful....I know we are all on the edge of our seats, when we can sit up! It's just reassuring to hear everyone else is as XMRV tidbit hungry as I am! We will have to start planning the big CFIDS treatment party of the world....a sort of Woodstock gathering in which, once treated, we can all dance again. ~FernRhizome

 

[CBS]

Thanks for these links. I was desperate to find his slides. The actual links didn't seem to work but got me to this : Peterson ppt Did I get the right one?

Jim (and everyone else who tried to follow my bad links),

All of the links in my oriignal post (#10) should work now. My bad. I copied without previewing and testing. The lnks had all been truncated.

My apologies,

Shane

 

[alice1]

Thanks for posting them.

 

[Marylib]

January 22. We will all know more after then.

 

[CJB]

Thanks for everyone's thoughts on the current "silence." It is helpful....I know we are all on the edge of our seats, when we can sit up! It's just reassuring to hear everyone else is as XMRV tidbit hungry as I am! We will have to start planning the big CFIDS treatment party of the world....a sort of Woodstock gathering in which, once treated, we can all dance again. ~FernRhizome

This XMRV news hit so hard. It triggered so much anxiety. I hope this parable will help some.

FernR, I never was a good dancer, but I would love to dance badly at your gathering


There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit.

"Such bad luck," they said sympathetically.

"We'll see," the farmer replied.

The next morning the horse returned, bringing with it three other wild horses.

"How wonderful," the neighbors exclaimed.

"We'll see," replied the old man.

The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.

"We'll see," answered the farmer.

The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.

"We'll see" said the farmer.

 

[JustJack]

WPI's facebook page has lots of new things on it daily. Might be worth a check for info too.
JJ

www.facebook.com/pages/Whittemore-Peterson-Institute/

 

[DrDonnica]

My husband, children & I went to NYC last week to give blood for Dr. Derek Enlander's XMRV study. Unfortunately, it's blinded, so we don't get to know the results. While we were there, we made 3 short videos for TheDoctorsChannel.com to educate physicians about XMRV & CFS. I'll let you know when they're on. We kept them very basic! My understanding about the WPI work is that they have continued their study from teh 10.09 Science publication. . .my guess is that they're probably working on a follow-up publication. Also: they're probably SWAMPED with inquiries! Remember they have to work to pay the bills as well as work to crank out the research results. And if they do have a follow-up paper in progress, they really can't talk about it until it's published.

 

[Kati]

Thank you Dr Donnica, much appreciated.

I think we are all in a frenzy and anxious to know the latest news, replication study and everything. And people here at the forum have all eyes on every little bit and pieces of information that we can have that's regarding CFS/ME.

"Fly, little bird, fly!"

 

[anne_likes_red]

Andrea ( Whittemore) mentioned before Christmas that they would be able to announce some exciting developments in the New Year.
I took that to mean some new and interesting collaborations...purely speculative on my part :worried:

Great to hear about physicians being educated, really thats a key advancement. I hate to think of them working so hard to pay their bills that they miss out on the really important stuff