News of replication of WPI XMRV study...

[Eric Johnson from I&I]

At a certain point, you just have to become mordantly sarcastic and mock-hysterical -- at least I did. Permanently, I mean. If you can pull it off, its definitely the enlightened alternative to screaming.

 

[Cloud]

I wonder who he spoke with...
AZT is so toxic. The question is can you pulse some relatively nontoxic antiviral (XMRV has a low mutation rate) as a monotherapy--get it down, go off, go back on when it starts to replicate again? Or do you have to be on something toxic, with serious potential side effects of it's own, for good?
Much research to be done.
And where does chronic lyme intersect? How many of us have XMRV? And is it transmitted in ticks.
I still have so many questions...

My GP, who is the best Lyme Doc up here, says she is not convinced that xmrv is anymore the puppetmaster than Lyme....Lots of great information unfolding for us quickly. Exciting times.

 

[kurt]

And from another thread:
Hi Kurt,

I understand that you believe the WPI findings will likely not hold up. . .
Koan

Hi Koan,
Yes, I do believe the WPI findings will not hold up, for many reasons, not just because of what I have heard about the replication studies. I have posted about that previously.

Yes, I have connections with both C.D. and the CDC retroviral research group. Almost wish I did not. And like others on this forum, I have heard some rumors from other studies as well.

As for testing, I would be confident with a test from C.D. However, any testing for XMRV right now is a bit of a gamble because of the lack of confirmation of the WPI finding. If I were low on funds I would probably delay testing for awhile. See what happens.

Thank you so much Kurt for this detailed, helpful reply! Please keep us in the know, or at least, in the realm of better informed speculation.

Cecelia

Regarding replication studies, I am not speculating. And this is not a rumor.

I appreciate Kurts analysis of the situation. I think we should be ready for anything. We won't know until we know. It sounds like we won't really know until several replication studies are done and they start to agree with each other.

As PCR tests have been around for a long time and they are a very important part of research and have been well studied - it would seem to be easy to replicate one but there seem to be a lot of variables when you're starting out fresh with a new pathogen test. Garcia recently transcribed Dr. Coffin's testimony (thanks Garcia! - he transcribed did Peterson's as well):

These high tech labs clearly each want to come up with the best assay for XMRV. Theres no guarantee right now that it will the WPI - each is going through the process themselves. Look how Coffin puts it: "We may win out" - its a race!

http://aboutmecfs.org/Rsrch/XMRVCoffin.aspx

Its clearly not an easy thing to do. It could even be that a first replication study could say 'No XMRV in CFS" and over time be proved wrong.

Well said Cort. This IS a competition of sorts and we really need to see the results of multiple studies. And I think competition is the silver lining in all this, because if XMRV does not turn out to be validated, there could be many new groups in a race to solve CFS.

 

[Cloud]

Before I get excited (which I already am), is this person trustworthy?

He is very astute and was right on with the advice he gave me....

 

[Cloud]

It's my understanding that there are a number of retroviral drugs already on the market that might be effective against XMRV. So they could be prescribed "off-label". Unlike Ampligen, they have already been approved by the FDA (Food & Drug Administration). It is up to doctors to prescribe them off-label; the FDA does not control that.

Don't be surprised if treatment turns out to be a mix of drugs. That's certainly the case for HIV/AIDS.

Now to the situation in England... (sigh). What a mess. Hopefully, should causality between XMRV and ME/CFS pan out, even your not so nice NICE will come around.

Some anti retro-viral drugs are currently being prescribed "off label" for xmrv, but they will be extremely expensive with no insurance coverage unless your HIV +.
Regardless, connecting with cutting edge info on early responses to these meds is critical for me and the decision I have to make real soon when I stop the Vistide. Bottom line is that I need to know about responsiveness and side effects. Another VERY important issue is Resistance, and that would take more than 2-3 months to determine. Giving a retro-virus meds it will become resistant to, is like sending it to the gym to become stronger. Anyhow, I would like to give at least 2-3 months to learn these things before starting any antiretrovirals, but I will not have that much time after stopping the Vistide, which is going to happen soon.
I also have another option.......my GP (different doc) wants to treat Babesia (and marginal Lyme) as soon as I stop the Vistide, which would also be perfect timing because my immune system may now be getting the upper hand. We knocked the CMV and other Virus's down with the Vistide, and now quickly hit the Babesia with some anitbiotics, and I would be in good shape, unless......xmrv truly is the puppetmaster and is by then kicking CMV in the ribs to get up and party again. I do believe in spooks, I do, I do, I do

 

[Cort]

Viracor

I came across this from a PDF file on the original XMRV discovery. Apparently XMRV was discovered using the Virochip microarray which contains 20,000 gene sequences from all the known viruses. This is the chip the WPI has been using to detect viruses in its patients.

Anyway ViraCor can pick up new viruses apparently because it has genetic sequences of older viruses that the new viruses evolve from. When get prostate cancers defendant genetic sequence that was close to a murine (mouse) leukemia virus (MuLV) that had become integrated into the mouse genome.

When they sequenced though they realized that this new virus cannot grow in mouse cells - it only grows in other types of cells; it is not endogenous it is exogenous: XMRV was born.

This is amazing because they appear to assume that XMRV was endogenous - became part of mouse DNA - and then escaped to become exogenous. They didn't know that could happen.

The strange thing for us is that the WPI has been using the ViraCor screen for several years and it didn't take up XMRV. They found it when they sent samples to the Cleveland clinic I believe. Why did Viracor pick up XMRV with De Risi and not with WPI?

This is probably a red herring; they later did genetic studies that indicated that XMRV from the WPI is very much like the XMRV from prostate cancer but it would interesting to know why ViraCor didn't pick it up. Does it signify anything?

http://www.hhmi.org/news/pdf/derisi20060331.pdf

 

[MEKoan]

Hi Cort,

This is a link to a TED talk by Joe DeRisi on the Virochip. It's fascinating.

http://www.ted.com/talks/joe_derisi_hunts_the_next_killer_virus.html

ETA Technology has changed so much, you can build your own DNA assay machine.

Maybe we should!


EagainTA Doh, I thought I encountered this talk while watching TED, as I am wont to do, but I bet I got the link right here because it talks about XMRV. I think I'll leave it here, just the same, for those who may have missed it.

 

[kurt]

... The strange thing for us is that the WPI has been using the ViraCor screen for several years and it didn't take up XMRV. They found it when they sent samples to the Cleveland clinic I believe. Why did Viracor pick up XMRV with De Risi and not with WPI?

This is probably a red herring; they later did genetic studies that indicated that XMRV from the WPI is very much like the XMRV from prostate cancer but it would interesting to know why ViraCor didn't pick it up. Does it signify anything?

http://www.hhmi.org/news/pdf/derisi20060331.pdf

Very interesting. What jumped out at me in that release was the following:

(from DeRisi & Ganem) "We don't see the (XMRV) infection in people who don't have the RNASEL mutation, which suggests strongly RNASEL is an important part of the defense against retroviral infection."

So how does WPI square that with the fact that their study as reported in 'Science' states that they found no correlation between the RNaseL status and infection with XMRV? That suggests to me that there is something unexplained going on in the WPI finding.

 

[jenbooks]

Confusing

Very interesting. What jumped out at me in that release was the following:



So how does WPI square that with the fact that their study as reported in 'Science' states that they found no correlation between the RNaseL status and infection with XMRV? That suggests to me that there is something unexplained going on in the WPI finding.

It's totally confusing unless the CFS people have their Rnase totally derailed by another more primary infection and *then* xmrv takes over? So it's not genetic but environmental? Maybe I'm grabbing at straws here as I never paid too much attention to Rnase.

 

[Cloud]

Guess I need to read the actual study because I thought WPI reported a definite correlation between XMRV and RnaseL dysfunction.

 

[outofstep]

rnase l genetic variation & XMRV

The connection between the mutation & xmrv in prostate cancer was recently disproven, ie everyone is at risk for XMRV, not just those with the mutation:

http://www.sciencedaily.com/releases/2009/09/090907162310.htm

http://www.nlm.nih.gov/medlineplus/news/fullstory_89097.html

 

[MEKoan]

I hate to add to the confusion but

I believe it was the supposed RNaseL mutation link that got them thinking but that RNaseL proved to be of uncertain importance in both the CFS and the prostate cancer populations.

It could be that the RNaseL mutation has been found to be more common in both populations but does not correlate to XMRV infection.

I will erase this post if that is not accurate.

 

[cold_taste_of_tears]

My understanding from reading Peterson, Silverman, etc is that XMRV descended or evolved from the mouse retrovirus--a very long time ago was the estimate, based on the genetic changes. This was just their estimate. I will have to try to find these quotes for us. How and when it entered the human body, they don't know

Hi Cecelia, three things from Dr Cofffin on XMRV:

1) XMRV in humans almost certainly came from mice originally.

2) XMRV is relatively recent.

3) Active XRMV only found in lab mice and not wild field mice - as they lack the gene to be infected.

I'm sure you knew that already, but it's interesting what he said about coming from Laboratory mice I thought...

 

[Cloud]

I'd rather hear rumours that the XMRV link isn't looking likely as soon as possible. The longer the hope builds, the worse it will be if it turns out the research is flawed. Bring on the bad news quick imo.

I agree and not only for the Hope factor, but for the wise decision factor as well....Most of what I read around these ME/CFS support sites is just speculation and opinions. We learn from those discussions. Of course we need to not distort the facts, but I for one am capable of forming my own opinion about a stated rumor. Besides, I feel it was a good thing because it got everyone digging for the truth. She qualified it as a rumor, and that works for me. If anyone finds that sharing opinions and "stated" rumors are unacceptable, maybe that could be declared in the thread title.

 

[Cloud]

I think he means their patient cohort was very carefully chosen to maximize the percentages who would test positive.
Who knows. I report a rumor--I didn't ask the details--it's not my business as a nonscientist. They share their information as an insider network--but it may take a while to write up a study, pass peer review, and publish...
Perhaps at the end of day, XMRV will be shown to be significant in a portion of CFS/ME patients--but not the overwhelming majority. Who knows.
I certainly find it notable and interesting as it's a human retrovirus.
For that blogger to say it is nearing consensus as the "cause" makes no sense to me, as there are other organisms that can cause that picture (such as borrelia).
And besides we already know that there are distinct cohorts, for instance, those in Incline Village or Lynbrook got sick in outbreaks that looked like bad flu's from which they did not recover. Those outbreaks suggest a highly contagious organism.
Other people have had slow insidious onset. And sometimes family members come down with it and sometimes they don't.
That doesn't look like the same entity anyway.
I have no idea if any of these rumors--that there is a consensus and confirmation of results not yet published; or that the results aren't panning out--are valid.
So we just have to say at this point they're all rumors. Might as well report them and just patiently wait.

HepB Vaccines were my trigger 15 years ago. It was sudden onset and I had no acute infections at the time. Yet now, I am recovering with anti virals.

 

[jenbooks]

hep b

HepB Vaccines were my trigger 15 years ago. It was sudden onset and I had no acute infections at the time. Yet now, I am recovering with anti virals.

Hi Ross I've heard that--Peterson talked about it--and folks on here, too (health care workers). Hep B has some kind of autoimmune aspect I think. It concerns me too that autism has skyrocketed since hep b vaccines were instituted on the day of birth for newborns--I think late 80's.

 

[Kati]

HepB Vaccines were my trigger 15 years ago. It was sudden onset and I had no acute infections at the time. Yet now, I am recovering with anti virals.

Ross your case give the hope to other PWC that are from different subsets, not just the EBV or infectuous subset.

There has been lots of speclation lately in this forum on the regards of XMRV replication studies, some with so said good sources, some good for us, some bad for us. A lot of us is also taking people for what they said word for word, though the quote was taken from a couple months ago. It's a big roller coaster in here!

I suspect that as the data is so recent, developments and knowledge about XMRV occurs almost on a daily basis as more scientists put their hands in the pot.

 

[Andrew]

My heads spinning. Correct me if I'm wrong. We now have two U.S. studies about XMRV and prostate cancer (2006 and 2009). One German study about XMRV and prostate cancer. And one U.S. study about XMRV and CFS.

???

 

[Cloud]

Hi Ross I've heard that--Peterson talked about it--and folks on here, too (health care workers). Hep B has some kind of autoimmune aspect I think. It concerns me too that autism has skyrocketed since hep b vaccines were instituted on the day of birth for newborns--I think late 80's.

It seems us Nurses are the top profession with ME/CFS. I meet way more Nurses than any other profession within the PWC community.
The hepB vaccination of newborns makes no sense to me at all. Some states were doing school HepB Vaccination clinics as well. It's freakin crazy because they are not at risk.

 

[Cloud]

Ross your case give the hope to other PWC that are from different subsets, not just the EBV or infectuous subset.

There has been lots of speclation lately in this forum on the regards of XMRV replication studies, some with so said good sources, some good for us, some bad for us. A lot of us is also taking people for what they said word for word, though the quote was taken from a couple months ago. It's a big roller coaster in here!

I suspect that as the data is so recent, developments and knowledge about XMRV occurs almost on a daily basis as more scientists put their hands in the pot.

Very exciting times....I'm just grateful to have options.