Official WPI response to the Singh study

[eric_s]

They also always said "a XMRV" in this response, it's the first time i hear this. Before it was always "XMRV". I don't know if that's because it was another person who wrote it or because they want to imply that there are different strains.

Does anyone know what p-variant XMRV is? Does p stand for polytropic? I'm sure they know why they are calling it this way, but aren't polytropic and xenotropic mutually exclusive?

 

[WillowJ]

yes, p is for polytropic.
polytropic and xenotropic are mutually exclusive for the same strain of virus, but a person could be infected with some of both kinds.

I was thinking the same, that "a XMRV" meant "a strain of XMRV"

 

[WillowJ]

Yes it's great news, but don't forget that Switzer of the CDC has recently published a paper that establishes that XMRV is a human virus, with no possibility of it being either a mouse contaminant or a contaminant from a cell line, and he has sequenced 3 entirely new strains... I thought that was actually better news than this news... The CDC confirming that XMRV is a human virus, and that it has barely detectable, extremely low copy numbers in prostate tissue and is extremely hard to detect in the blood... I never thought I'd see the CDC confirm that XMRV is a human virus, and then single-handedly blow all of the negative studies out of the water:
http://phoenixrising.me/forums/showthread.php?11415-Switzer-now-finds-(some)-XMRV-in-Prostate-Cancer

but, Bob, we aren't used to getting anything helpful from CDC at all ever, so that just hasn't registered yet ... I think it might take a few years to wrap our minds around that one

 

[Wayne]

I still think it's possible that the WPI is right about XMRV and CFS, but the way they're engaging with their critics reminds me of the faith based approach CFS has had far too much of. Hopefully their faith will be well placed, but I would prefer a more cautious and careful approach.

Hi Esther,

I find it interesting you comment about the way WPI engages with their critics, but nothing about how their critics engage with WPI. It has seemed to me that WPI's and Judy M's critics (including much of the media) have been irrational and unprofessional and that WPI's responses to them have actually been pretty moderate, albeit assertive (which I like). Have to say, I agree with Bob:

Yes, my guess is that there has been a cliquey smear campaign against Judy within the scientific establishment. ... They probably see her as a problematic trouble maker who dares to test and challenge established scientific ways of thinking. ... I imagine it's a bit of an old boys network within the scientific journals as well.

 

[August59]

The way I understand the situation is that no journals will publish Judy Mikovits' work, just because her name is associated with it. (i.e. it's too hot to publish - too controversial.)

That's partly why Lombardi has taken over Mikovits' previous role at the WPI - so they can get their research work published.

I don't think it is just Dr. Mikovits that has had problems getting things published. At one time it was anything that was positive toward XMRV, in that journals did not want to publish it until the BWG had completed Phase III. This of course was before the contamination issue had come up.

The issue of a journal having the ability to interfere with information being made available to researchers is something that I just cannot wrap my mind around. Anyone that subscribes to a medical journal should have the right to read research and make their own opinion as to whether or not to put faith in it. The whole idea of medical and scientific research only being made available if a "journal" deems it worthy of producing significant "sales" is absurdly WRONG. Due to this type of politics, there isn't any doubt that people suffering from complex diseases will be denied treatments and/or cures for a much longer period of time than they should have too. This is not the appropriate place for "capitalism"!

 

[Waverunner]

The WPI will either be spectacular heroes or spectacular goats.

I agree. The problem I see is that everyone except the WPI would have to be stupid in order to not find a virus if it is actually there. These people should be able to conduct scientific work by themselves. So either the people from WPI are heroes or complete goats. I feel that this year will give us the answer.

 

[heapsreal]

Anybody pro viral cause of cfs seem to get squeezed out by the authorities and they seem to play dirty, if its not contamination they use other ways like try to make a case of incompetence, negligence etc etc. Why dont they do this to the psychobabblers and their whacky theories????????????????????/

 

[dannybex]

"WPI and the U.S. clinical laboratory performing XMRV tests pursuant to a license agreement with WPI have extensive controls in place to prevent and detect contamination. Approximately three thousand tests have been performed on patient samples to date using clinically validated tests; about one third have been found to be positive."

First it was 67%, then 90% upon further testing, now it's 33%? I don't get it...(as usual).

 

[currer]

Hi,
Yes I am reassured by the WPI's statement.
I agree with most of the posts here.
I think the WPI have genuine findings ( now confirmed by the (overlooked ) paper by Switzer and the CDC, (go and check out that thread)) genuine findings of MRV's in human samples.

It doesn't matter HOW MANY negative studies are done if those negative studies aren't capable of finding something that is there.
IMPORTANTLY,The CDC found just what JM had been saying is there in blood, they just couldn't find much of it.
Now everyone ought to listen to what JM has been saying about how to find this virus, and get better at finding it.

Why are we surprised? We have been ill and dismissed for decades because researchers could never find what was wrong with us. Why would we assume this search would be easy and uncontroversial to do?

Esther - Scientific debate is not gentle in these circumstances, it is a tough affair. The WPI are correct to stand up for their findings and defend them. That is how science progresses. It is not done by consensus.

Finding MLVs in humans would be very disturbing to the entire medical establishment because CFS/ME would then be an iatrogenic disease. This could be why there has been a smear campaign.
The WPI are going to have a real fight on their hands.

On the other hand it could be that these researchers realise the importance of the WPI's finding and are competing to get the credit for this discovery - which could provide a reason for the unexplained rise in some cancers in recent decades.

 

[currer]

"WPI and the U.S. clinical laboratory performing XMRV tests pursuant to a license agreement with WPI have extensive controls in place to prevent and detect contamination. Approximately three thousand tests have been performed on patient samples to date using clinically validated tests; about one third have been found to be positive."

First it was 67%, then 90% upon further testing, now it's 33%? I don't get it...(as usual).

Hi,
The samples they are talking about are from the diagnostic blood tests, I think, (the ones patients pay for at VIPdx), not research tests.

 

[currer]

Anybody pro viral cause of cfs seem to get squeezed out by the authorities and they seem to play dirty, if its not contamination they use other ways like try to make a case of incompetence, negligence etc etc. Why dont they do this to the psychobabblers and their whacky theories????????????????????/

GOOD QUESTION!

 

[heapsreal]

if science is objective like its promoted it is, we wouldnt have a problem but theres alot of resistance to change among scientists, maybe because it makes them realise how little is really know. Like doctors, have you ever heard one say they dont know something. I wished a few docs would admitt to not knowing anything about cfs rather then label someone with depression, but they would rather label someone, even if its wrong then say they dont know. Maybe scientists are the same way??????????????
Im not saying Im a brain surgeon either, far from it.

 

[alex3619]

"WPI and the U.S. clinical laboratory performing XMRV tests pursuant to a license agreement with WPI have extensive controls in place to prevent and detect contamination. Approximately three thousand tests have been performed on patient samples to date using clinically validated tests; about one third have been found to be positive."

First it was 67%, then 90% upon further testing, now it's 33%? I don't get it...(as usual).

Hi dannybex, in a tightly controlled subgroup it was as high as 98% as I understand it, 95% is for a fairly well defined group, 33% would be for the general populace, some of whom have ideopathic chronic fatigue and are looking for a cause, some of whom have loosely defined CFS, some have tightly defined ME etc. Not everyone who has fatigue will have XMRV, and path testing will be positive for XMRV only in a subset. What this implies, presuming the tests are sufficiently sensitive (and we don't know all the strains involved yet) is that not all cases of chronic fatigue, or badly defined CFS, will have the same cause (again presuming that XMRV is causal, it may only be a marker even if it is associated). What we don't know yet is what percentage of strictly defined CFS patients are Xpos, or what percentage of strictly defined ME patients are Xpos.

This is not really a surprise.

Bye
Alex

 

[eric_s]

yes, p is for polytropic.
polytropic and xenotropic are mutually exclusive for the same strain of virus, but a person could be infected with some of both kinds.

I was thinking the same, that "a XMRV" meant "a strain of XMRV"

Thanks Willow, but then in my layman's opinion it would be better to call it PMRV and not a p variant XMRV, but no problem, what matters is that they find it and will hopefull prove that.

Finding MLVs in humans would be very disturbing to the entire medical establishment because CFS/ME would then be an iatrogenic disease. This could be why there has been a smear campaign.
The WPI are going to have a real fight on their hands.

Why would it be iatrogenic then?

I agree. The problem I see is that everyone except the WPI would have to be stupid in order to not find a virus if it is actually there. These people should be able to conduct scientific work by themselves. So either the people from WPI are heroes or complete goats. I feel that this year will give us the answer.

Also in prostate cancer there were negative studies, so if this link were to be true, it would not be something so unusual that not every group is able to find it.

It might be that Ila Singh is correct, but i find it problematic to discredit the positive studies by producing a 0/0 study and then say this is prove it can't be found in the blood and so the positive blood studies can't be correct.
I think one would have to find the reason why the experiments in the positive studies produced a wrong results or then use a method that can find the virus and find the same rate in healthy controls as in ME/CFS using that method. Like looking in respiratory secretions, for example (as in Fischer et al.). Since looking in prostate tissue is not really doable and for other types of tissue i don't know about any positive study yet. Even though XMRV has been found in the stomach of individual patients.
Or the authors of the positive studies would have to fail in a blinded experiment.

I hope i'm not giving a recipe for foul play here. But i guess if there really were anyone who wants to do something dirty they could figure this out by themselves.

 

[toddm1960]

I like this part too.

This must be that "good science" at work again. Hold back anything that changes the current paradigm.

 

[Cort]

I haven't looked at all of this but I am not reassured by the first part

A XMRV was isolated from one of those patient's PBMCs, cloned and fully sequenced (GenBank accession number GQ 497343 as identified in the NIH genetic sequence database). Sequence data demonstrates that this virus is clearly distinct from XMRV (vp62) and 22Rv1.

This appears to contradicts a finding by a geneticist who incorporated all known XMRV and MLV sequences....What do they based their conclusion that it is distinct on? I think Coffin says he believes the amount of variation is not significant.

A budding virus particle from that sample was pictured in an electron micrograph in Lombardi et al. Virus from that patient sample was also transmitted both from the PBMCs and plasma to an uninfected indicator cell line, LNCaP.

I don't see how this contradicts the Singh study. All of these findings could be explained if XMRV is a contaminant. Dr. Singh,after all, is not saying that XMRV does not exist... She is saying it is not found in people with CFS (but is found in the WPI samples.) So if XMRV is 'floating around' the WPI, of course it is present in samples, and in LnCap cell lines....

Finally, these results were supported by a separate lab using serological methods as reported by Lombardi et al.

That is a point in their favor...

 

[alex3619]

if science is objective like its promoted it is, we wouldnt have a problem but theres alot of resistance to change among scientists, maybe because it makes them realise how little is really know. Like doctors, have you ever heard one say they dont know something. I wished a few docs would admitt to not knowing anything about cfs rather then label someone with depression, but they would rather label someone, even if its wrong then say they dont know. Maybe scientists are the same way??????????????
Im not saying Im a brain surgeon either, far from it.

Hi heapsreal, I have told this story before to several people, but here it is again. When I was working toward my Ph.D. I was talking to a researcher friend of mine and said I could not keep up with all the research in my one topic, there was no way to learn everything. His reply: "That is the beginning of wisdom". Nobody can know everything, even on a narrow topic. In 1978 I was told the literature in biochemistry alone was doubling every four years. What doctor can keep up? What scientist? To address a problem in updating knowledge first it has to be recognized that the problem exists. Denying it only compounds the issue, leading to even greater problems over time. Too many don't get that.

Bye
Alex

 

[currer]

Cort, if XMRV is a new virus and difficult to find, "all known samples" will be an incomplete category and no conclusive line of reasoning can be developed from this assertion.

The recent Switzer/CDC paper found a widely variable replicating virus-
Quote- "The gag sequences from patient 5956 clustered with XMRV sequences from a prostate cancer patient (VP 88), a xenotropic mERV found on mouse chromosome 8 and a PMLV sequence identified in a blood donor (BD-28) by Lo et al."
http://www.plosone.org/article/info:...9005#abstract0
PR thread "Switzer now finds (some) XMRV in prostate cancer patients"

So if the Switzer paper finds a variable XMRV, I suppose the WPI is basing their conclusion that the virus they find is distinct, - on the sequences they find.

 

[Bob]

Hi heapsreal, I have told this story before to several people, but here it is again. When I was working toward my Ph.D. I was talking to a researcher friend of mine and said I could not keep up with all the research in my one topic, there was no way to learn everything. His reply: "That is the beginning of wisdom". Nobody can know everything, even on a narrow topic. In 1978 I was told the literature in biochemistry alone was doubling every four years. What doctor can keep up? What scientist? To address a problem in updating knowledge first it has to be recognized that the problem exists. Denying it only compounds the issue, leading to even greater problems over time. Too many don't get that.

Bye
Alex

Interesting post, alex.

That's what I've found personally with all the ME news and information - I just can't keep up with it all - And I'm only scratching the surface, in terms of what I'm learning about the history of ME, virology, the immune system etc etc etc.
It's a never ending job to keep on top of all of the information.
And that's before I put the information to any productive use.

 

[heapsreal]

Interesting post, alex.

That's what I've found personally with all the ME news and information - I just can't keep up with it all - And I'm only scratching the surface, in terms of what I'm learning about the history of ME, virology, the immune system etc etc etc.
It's a never ending job to keep on top of all of the information.
And that's before I put the information to any productive use.

Productive use is to use the tommy gun principle, throw every dam thing at it and hopefully something works, lol .
Vitamin A-Z, av's, arv's, abx, antifungals, immune modulators, hormones etc etc, plus find a couple of new jobs to pay for it all, lol.
Treatment is a real trial and error too, what works for me might make someone else feel like crap and vice versa, but its the only system we have when we are our own doctors.

cheers!!!