XMRV Study No. 4

[usedtobeperkytina]

In reading Osler's Web, you see the same scenario in the US in the 80s and 90s. Researchers presenting requests for research dollars, but not getting any. CAA in early days tried to get politicians involved. Politicians said they are loath to tell NIH what studies need approval, that is a question for scientists. The questions at the time centered over whether the independent reviewers of proposed studies were the "experts" who had concluded the illness is psychiatric, so that only studies along those lines were the ones granted research money.

So, what is the difference this time.

HOPE ALERT :

The difference this time is that prostate cancer patients are involved. Researchers trying to find out about that disease will also be asking for money for XMRV research. Add to that, Autism. The more other illnesses that are shown "linked" to XMRV, the more funding for research to find out how this virus works. Basically, we may be the family member that no one wants to admit exists, but we will get some food if we make lots of friends by helping them with their chores.

So don't be discouraged all you folks in Uk. We have more on our side now than just ourselves and our advocates. The XMRV genie is out of the bag and exposed for causing havoc in the lives of more than just us.

Tina

 

[usedtobeperkytina]

and

And by the way, only because of the higher rate of lymphoma in CFSers in Incline Village did Mikovitz get interested. If you listen to her talk on Jan. 22, you will see she talks a lot about cancer. That is her first love, or should I say, enemy.

I can see that whereas she has great understanding for our suffering and wants to fight for recognition for us, she sees this as an opportunity to find the answer to many, many illnesses, cancers included, not just CFS.

Tina

 

[Gerwyn]

This is precisely why I think we should distance ourselves from XMRV until it is better proven. When we hang our hat on a first study of something like this we put our own ability to advocate for ME/CFS at risk. We simply must find a better way to create change, we are here, we are human, we have rights, we are obviously sick. Some of the best research into the biological basis of ME/CFS has occurred right in or near the UK !!! Read Sarah Myhill's work with mitochondria, or Dr Gow's work with WBC abnormalities for example. You already have ammo, with or without XMRV.



AIDS is not a retrovirus, maybe you are speaking of HIV. And I guess we disagree, HIV does not cause CFS type symptoms although there are a few commonalities. I know that first hand from my acquaintance who died from AIDS. There are over 4000 retroviruses in our DNA and only a few have been identified as pathogenic, which ironically includes HERV K18, found activated by HHV6 in CFS patients and possibly responsible for the reverse transcriptaise found in CFS patients. But yes, I agree about exogenous retroviruses, most of the harmless ones are not found in humans. At least not that we have found yet.

As for the test sensitivity, they relied on the Science article saying 100-250 ul blood sample for PCR with no stated culturing was adequate to find XMRV, which we now hear from WPI may not be correct, but that is too late, they have to be able to stand by the Science article or make a retraction or correction.

And WPI says they found XMRV in 20+ year old blood samples so RNA viability is obviously not at issue, unless they did not actually find that in those old samples and maybe had false positives.

But I agree WPI is not faultless, however I do believe they are doing their best and trying hard and what is happening is typical of the leading edge, you just can not completely predict where this will go.

THE WPI ISOLATED DNA AND RNA from fresh blood
THE SCIENCE PAPER GAVE INFO RE PCR and some on Rt-PCR THE DUTCH STUDY USED RT -_PCR only and did not even bother to use fresh blood

.They did not take much notice of the Science paper did they! So why did they need information about blood volumes that are in the public domain for isolating and preserving RNA anyway.

The dutch workers ignored the data showing the time limit for recovery of viable RNA from frozen blood is 15 months not 15 years.They then did not bother to test the viability of their extract!

They then implied that there was evidence that PMBCs were immunocompetent after twenty years--yes because of IL secretion what they did not say that the replicative viability of B and T cells in frozen blood is a maximum of two years.

Yet they knew they needed replicative cells to isolate viral RNA!

My other point clearly referred to EXOGENOUS RETROVIRUSES but endogenous retroviruses cause their own problems

If you are not aware of the bredth of symptoms associated with HIV I,ll happily post a reference I am very sorry about your friend

Sarah,s research is very good but we still lack the causative model that can explain such disparate symptoms---without one we are unlikely to convince the medical profession if history is anything to go by.

 

[Anika]

Cranking through WPI cohort etc.

The fact that these researchers seem unaware of readily available information regarding the cohort for the WPI study is mind boggling to me (not that it takes much). Here is the description from the supplemental materials to the Science study, which are available at http://www.sciencemag.org/cgi/data/1179052/DC1/1.



Information regarding the cohort can be found on the WPI website page regarding the BioBank here: http://www.wpinstitute.org/research/research_biobank.html. Some key points:


There is a lot more on that page, but you get the idea.

Jspotila - I agree with you - scientists rely on papers published in peer-review scientific journals (which can be online)above all, not press releases, patient presentations, conference presentations (which are a bit more trustworthy but still taken as preliminary). This was explained to me by a trusted mentor when I was a young student who wasn't sure if I wanted to publish.

The WPI, as much as I admire and have donated to it, needs to be clear and consistent in its presentation of the data and keep the research world as aprised of its updates as it has its constituents. I've had several friends in science doubt the PR methods of the WPI and this also affects their perception of the research there.

From my notes and reviewing the Science materials:
- age/sex of cohort first revealed at CFSAC, not in supplementary Science materials
- breaking code and samples found to be international - Dr. Mikovits talk, in Santa Barbara January
- control cohort being people identified as "healthy" by several MD practices and people from paternity clinic - Dr. M talk in January

It's taken a bit of work to piece this info together, which it shouldn't have. These are basic points. WPI needs to get out a paper or good statement to SCIENTISTS about the subjects in their study, who are not going to attend talks geared towards patients or visit their website necessarily. Also, the points about the subjects on their website were added little bit by little bit AFTER the Science paper had already come out. They needed to have some of this data on there BEFORE the paper came out and as complete as possible. Hopefully, they've done this with the scientific community behind the scenes but a published paper would help many scientists not in the loop already but interested in XMRV research.

I know that there can indeed be political motivations involved, but the approaches we've seen yielding negative results are common ones in medical science. They rely on some simplistic assumptions about the organism involved and on the tests being used, but these are common assumptions for a "first cut" in new areas. They are the kind of thing that can be gotten out quickly after the publication of big study such as that in Science which runs counter to prevailing views.

Scientists who are familiar with, or who have developed themselves, sensitive PCR tests and used them in research, tend to assume that if the test is valid it will detect the signal of the organism if it's present, and a negative result says the organism is not present. This is a somewhat simplistic orientation from a kind of faith in the precision of the test Simplistic because: PCR tests are highly sensitive, but also highly specific, i.e. they pick up only the molecules of the specific primers being used; organisms put out different proteins during different life phases such that particular proteins may be in short supply for the primer being used; the tissue being tested may be a poor reservoir for the organism; and so on.

All this is separate from the differences in diagnostic criteria used-- and I agree with others that WPI was not clear enough in the original publication on this-- a difficult thing anyway for CFS/ME, especially country to country.

As far as I can tell, all of the studies scientists, including WPI, have tended to overstate the implications of their results either in the publications themselves or in interviews after publication. The most accurate statements from the European studies to date would be "Using our own methodology we failed to detect XMRV in ME patients selected by "x" criteria." Yet all have gone further in describing the implications of their results. WPI could have more greatly emphasized the importance of their findings being replicated especially given the extraordinary numbers they found. They also could have made it clearer in the Science study, as Mikovits has in subsequent lectures, they went to great lengths to insure that they obtained adequate levels of detectable proteins. These procedures and the reasons for them were not entirely clear to me in the original publication.

All of the hashing out of methodology and so on will take time. Clearly the kind of quick-and-simplistic studies that have been put together as the first response (the three European studies) are pretty much the norm in this kind of thing, and the studies using the more complex methodology WPI used in the original study will simply take longer to produce. The good news is that they are in process. It is not being swept under the rug. The bad news is that a lot of us with CFS/ME, have gotten taken up in the scale of the WPI findings as an indicator of the validity of their findings. Effect size does not make for validity, but it sure makes for hope.

I hate the waiting as much as anyone. I'm not worried about the build up of bad PR though, because there are too many people looking at this at this point, and there is so much going on behind the scenes that truth will out, one way or the other.

Sometimes I get the feeling Dr. V wants more info on the cohort.

Something isn't right here. From Dr. Vernon's analysis above:



From the WPI website ():


ETA - The Science paper, Dr. Peterson's CFSAC cancer slide, and the WPI website are in conflict. This is something they need to explain.

Lesley, Hope123, and jim, I appreciate your cranking through the cohort materials and sharing your perspective on the evolution of reported studies to date. Anne, like your style.

I don't think the material you quoted comes through in the quotes, but at least the links do - a great help for referring to when there's the opportunity.

 

[natasa778]

Kurt, HIV causes very very wide range of symptoms, the HIV-caused disease is by not means homogeneous (I also have a list) and an exogenous retrovirus would perfectly fit the range of abnormalities found in CFS/ME/FM/autism.... I am not sure if there is any type of consensus on what causes “fatigue” feelings in CFS, but be it mito/ATP/lactate related, or ryanodine receptors or HPA dysfunction, any of those can easily by caused by a chronic provirus infection …

 

[Mithriel]

Polio was the best studied enterovirus and the original epidemics were usually associated with polio epidemics. ME was called Atypical Polio at one point. Enteroviruses are so closely related that tests nowadays are just run on the species and they are only subtyped afterwards if it is needed.

It took them years to find the polio virus because it turned out that everyone got polio, it causes a respiratory infection, but only a few people went on to get what we recognize as polio.

Coxsackie B, an enterovirus causes Summer Flu but in some people it gives ME, again an abnormal reaction to a common infection. Before CFS, they found that people with ME had very high titres to Coxsackie B while controls often had Coxsackie B but their titres were lower. Dr Gow did not seem to appreciate this when I met him. He did not impress me very much, though he is not of the psychosocial school.

The epidemics were obviously caused by a virulent strain of the virus, but for some reason some of the people who got ill never got better and developed ME.

It is possible that XMRV is the unknown factor. I don't say it is but it could be.

For nearly twenty five years they have suspected that juvenile diabetes is caused by a genetic disposition + a Coxsackie B infection + something else, most likely a retrovirus.

There have been theories about what causes ME and CFS for years but the excitement about XMRV is unique. we are being spoke about as if the community latches onto any old thing in desperation for finding a cause but this is not true. In forty years of illness, things have come and gone. What is different about XMRV is the science behind it. Decent well thought out experiments that actually looked at patients like me instead of people with just fatigue.

The CDC, the CAA, the weasels, have been "working" to help people like me for over a quarter of a century and they have not helped me at all. The WPI have advanced the science in eighteen months. They may be wrong, but at least they are moving.

Mithriel

 

[kurt]

THE WPI ISOLATED DNA AND RNA from fresh blood
THE SCIENCE PAPER GAVE INFO RE PCR and some on Rt-PCR THE DUTCH STUDY USED RT -_PCR only and did not even bother to use fresh blood
.They did not take much notice of the Science paper did they! So why did they need information about blood volumes that are in the public domain for isolating and preserving RNA anyway.
The dutch workers ignored the data showing the time limit for recovery of viable RNA from frozen blood is 15 months not 15 years.They then did not bother to test the viability of their extract!
.

Thanks Gerwyn, as usual your post has caused me to dig deeper. In this case I contacted an expert in PCR testing and this is what I learned. Here is what he said: "This is the first group to use PBMC's instead of whole blood. ... They amplified both DNA and RNA, because it "was about 10 times more sensitive" than detection of DNA alone when detecting XMRV isolated from 22rv1 cells. So, [Gerwyn] may be correct that the RNA could have degraded over 18 years, but the DNA was still present at the expected levels as indicated by control amplification of the beta globin gene. The RNA was believed to still be intact because cells stored in that manner at that Netherlands lab were still alive, even after 12 or more years. However, regardless of whether or not RNA was still intact, the DNA was amplified along with the RNA, and there was no XMRV DNA or RNA present. This is actually a much more powerful finding than what I originally thought because of the use of PBMC's and the co-amplification of RNA."

Note also that WPI did not always use fresh blood.

I would love to hear Gerwyn's analysis of some of the other CFS research findings that have appeared over the last two years, including the many treatment studies. They are all pretty much getting swallowed up by this XMRV debate but in my opinion the answers are coming fast and furious right now, there is more success from treating CFS co-infections, treating leaky gut, treating methylation defects, etc, than I have ever seen before in CFS research. And we have new strong biomarkers. Why is all that getting so little airtime here?

Kurt, HIV causes very very wide range of symptoms, the HIV-caused disease is by not means homogeneous (I also have a list) and an exogenous retrovirus would perfectly fit the range of abnormalities found in CFS/ME/FM/autism.... I am not sure if there is any type of consensus on what causes “fatigue” feelings in CFS, but be it mito/ATP/lactate related, or ryanodine receptors or HPA dysfunction, any of those can easily by caused by a chronic provirus infection …

Certainly there are some common factors betwen AIDS and CFS, such as reactivated Herpes infections, that will lead to some common expression of symptoms. My point is only that a retrovirus does not have to be present to explain any commonalities, and there are some stark differences between AIDS and CFS that I have seen first hand.

The CDC, the CAA, the weasels, have been "working" to help people like me for over a quarter of a century and they have not helped me at all. The WPI have advanced the science in eighteen months. They may be wrong, but at least they are moving.
Mithriel

I think that is terrible to call CDC and CAA weasels, the CDC and CAA and others like them have no ability to force scientists to discover something that we may or may not have the basic science yet to understand. I know people involved with those organizations and they are just as dedicated to solving CFS as anyone at WPI. In fact Mikovitz is not even an expert in CFS at all. ME/CFS is just a very, very difficult problem to solve that is confounded politically by the similarity of some of its presentation to welfare case slackers. And I do not agree that WPI has advanced the science yet, that remains to be seen. Yes, they are moving, that I agree with, but science is about results, so we just have to wait and see. There may still be some basic scientific research needed before CFS can be solved, that may come from anywhere, some neuroscience or immunology lab may have to make a new discovery before we can put all the puzzle pieces together.

 

[Mithriel]

I did not mean the CAA were weasels, I was referring to Wessely's weasels, his set of buddies who referee each other's papers and exploit our suffering for their own profit.

ME research was taking off in the UK, exciting discoveries were being made but then the CDC decided to ignore those doctors who said Incline Village was another epidemic of ME. Suddenly we all had fatigue with the scope that gave to widen the patient base to almost anyone. The latest conference here by the weasels is entitled "Tired all the Time".

I became ill when I was fourteen and will soon be fifty six. The CAA may be in the process of changing their advice but they were quoting Peter White not that long ago. The CDC called him an expert. :Retro mad:

At least the WPI has never said that I should change my illness beliefs.

I have never driven a car, never been on holiday, never been employed. I have a right to ask people who have claimed to be working for people with ME or CFS, what they have achieved in twenty five years.

In the UK, our situation has got worse every year. The XMRV research may have saved you in the US.

Mithriel

 

[Advocate]

At least the WPI has never said that I should change my illness beliefs.
l

One reason Annette Whittemore's picture is on my refrigerator door is because of what she said in the televised session of the Chronic Fatigue Syndrome Advisory Committee this year. She said--and I hope I'm using her exact words--she said: "This is not a psychiatric disease, and never has been."

Oh, how I wish that the CFIDS Association of America had made such a clear statement years ago and had continued to say it and were saying it today.

 

[Gerwyn]

Thanks Gerwyn, as usual your post has caused me to dig deeper. In this case I contacted an expert in PCR testing and this is what I learned. Here is what he said: "This is the first group to use PBMC's instead of whole blood. ... They amplified both DNA and RNA, because it "was about 10 times more sensitive" than detection of DNA alone when detecting XMRV isolated from 22rv1 cells. So, [Gerwyn] may be correct that the RNA could have degraded over 18 years, but the DNA was still present at the expected levels as indicated by control amplification of the beta globin gene. The RNA was believed to still be intact because cells stored in that manner at that Netherlands lab were still alive, even after 12 or more years. However, regardless of whether or not RNA was still intact, the DNA was amplified along with the RNA, and there was no XMRV DNA or RNA present. This is actually a much more powerful finding than what I originally thought because of the use of PBMC's and the co-amplification of RNA."

Note also that WPI did not always use fresh blood.

I would love to hear Gerwyn's analysis of some of the other CFS research findings that have appeared over the last two years, including the many treatment studies. They are all pretty much getting swallowed up by this XMRV debate but in my opinion the answers are coming fast and furious right now, there is more success from treating CFS co-infections, treating leaky gut, treating methylation defects, etc, than I have ever seen before in CFS research. And we have new strong biomarkers. Why is all that getting so little airtime here?



Certainly there are some common factors betwen AIDS and CFS, such as reactivated Herpes infections, that will lead to some common expression of symptoms. My point is only that a retrovirus does not have to be present to explain any commonalities, and there are some stark differences between AIDS and CFS that I have seen first hand.



I think that is terrible to call CDC and CAA weasels, the CDC and CAA and others like them have no ability to force scientists to discover something that we may or may not have the basic science yet to understand. I know people involved with those organizations and they are just as dedicated to solving CFS as anyone at WPI. In fact Mikovitz is not even an expert in CFS at all. ME/CFS is just a very, very difficult problem to solve that is confounded politically by the similarity of some of its presentation to welfare case slackers. And I do not agree that WPI has advanced the science yet, that remains to be seen. Yes, they are moving, that I agree with, but science is about results, so we just have to wait and see. There may still be some basic scientific research needed before CFS can be solved, that may come from anywhere, some neuroscience or immunology lab may have to make a new discovery before we can put all the puzzle pieces together.

Was the guy you talked to a virologist.Did you tell him how they took the blood.How did he know the cells were still alive because the workers did not.Did he know about viral life cycles.He may be a PCR expert but they tried to find the RNA of a latent virus in non replicative phase!

Ask a laboratory that proccesses RNA for a living how long they think that RNA will survive frozen.The literature says 15 months max T an b cells 2 years max.your "expert" is entitled to his opinion but the published science disagrres with him.Anecdotes are not science.This is the second n= 1 you have used in support of an argument.immunocompetent does not mean alive and replicating as i think I,ve mentioned before.if they were so convinced their cells were alive--why did they not use the prescribed proceedures for proving such--throwing in pig virus is not the way to do it.there are commercially available tests that can prove this in a few hours.I am getting curious why you ssem to pick on minutae in the WPI methodology when you dont mention obvious shortcomings with others.if you doubt my comments re RNA stability and how you check for viability contacting the university of Pittsburg might be useful there are one or two experts there too!

 

[kurt]

Was the guy you talked to a virologist.Did you tell him how they took the blood.How did he know the cells were still alive because the workers did not.Did he know about viral life cycles.He may be a PCR expert but they tried to find the RNA of a latent virus in non replicative phase!

Ask a laboratory that proccesses RNA for a living how long they think that RNA will survive frozen.The literature says 15 months max T an b cells 2 years max.your "expert" is entitled to his opinion but the published science disagrres with him.Anecdotes are not science.This is the second n= 1 you have used in support of an argument.immunocompetent does not mean alive and replicating as i think I,ve mentioned before.if they were so convinced their cells were alive--why did they not use the prescribed proceedures for proving such--throwing in pig virus is not the way to do it.there are commercially available tests that can prove this in a few hours.I am getting curious why you ssem to pick on minutae in the WPI methodology when you dont mention obvious shortcomings with others.if you doubt my comments re RNA stability and how you check for viability contacting the university of Pittsburg might be useful there are one or two experts there too!

You have only commented on the RNA finding, yet my expert quote mentioned that you might be right about that but that the test still appeared capable of finding infected DNA in the samples. So I don't see why you continue to challenge the RNA part of that argument, I have agreed with that, the expert I contacted found some evidence the RNA might have survived, but I do not understand the details enough to comment further. So please address the DNA finding part of that statement, which was what my quote was mostly about.

Also please do not challenge my motives. I have the same goal you do and also have been sitting here for years missing my own children growing up. I want the cold hard truth and if the WPI finding is wrong and I find out I will tell everyone, and if it is right and I find out we all have XMRV I will also tell everyone. Right now the evidence that needs disclosure and is being ignored has to do with the WPI study, and I can not change that. I am sorry if people in the UK will suffer even more if XMRV is found not to be part of ME given all the expectations, but the truth is the truth and it must come out no matter what people would like to hear.

 

[jspotila]

Oh, how I wish that the CFIDS Association of America had made such a clear statement years ago and had continued to say it and were saying it today.

Advocate, I respect that this is your perception of the CFIDS Association, and I agree that Mrs. Whittemore's comments at the CFSAC meeting were powerful. However, I have to say - on the record - that the Association does not and never has believed CFS is a psychiatric disease. Our first dollar went to research, and over 20+ years we have funded work by Dr. Cheney, Dr. Klimas, Dr. Peterson, Dr. Komaroff, Dr. Jason, Dr. Rowe, and many others. Our public policy work has always focused on getting more funding for research into the physiological cause(s) and treatment(s) of CFS. Personally, I could never serve on the Board of an organization that questioned the reality and validity of CFS as a serious, disabling, physiological disorder.

 

[Gerwyn]

You have only commented on the RNA finding, yet my expert quote mentioned that you might be right about that but that the test still appeared capable of finding infected DNA in the samples. So I don't see why you continue to challenge the RNA part of that argument, I have agreed with that, the expert I contacted found some evidence the RNA might have survived, but I do not understand the details enough to comment further. So please address the DNA finding part of that statement, which was what my quote was mostly about.

Also please do not challenge my motives. I have the same goal you do and also have been sitting here for years missing my own children growing up. I want the cold hard truth and if the WPI finding is wrong and I find out I will tell everyone, and if it is right and I find out we all have XMRV I will also tell everyone. Right now the evidence that needs disclosure and is being ignored has to do with the WPI study, and I can not change that. I am sorry if people in the UK will suffer even more if XMRV is found not to be part of ME given all the expectations, but the truth is the truth and it must come out no matter what people would like to hear.

The study methods are outlined below---no test for viable RNA . No mention of living cells.The rest is hilarious! They were looking for cDNA not DNA! I dont impune your motives but to say that the evidence that needs disclosure is from the WPI is baffling.They have been far more open than others in this game.the fact that this has been ignored is my source of puzzlement.The WPI have endured months of peer review and the others at most a couple of weeks if not over a g and T.The fact that the RNA might have survived is nowhere near good enough.The science is way against that the odds against survival are massive and they tried to isolate RNA in samples some ten times older ,than had ever been done before without checking its viablity


A fixed amount of phocine distemper virus, a paramyxovirus that was used as internal control, was added to the samples before nucleic acid isolation so that we could monitor RNA quality and possible inhibition of amplification of the samples.14 RNA in the total nucleic acid isolates was reverse transcribed to copy DNA.

he reaction mixture contained 12.5 l of 2X LightCycler 480 Probes Master (Roche Diagnostics), 1 M of each primer and 400 nM of each probe, and 5 l of copy DNA in a reaction volume of 25

Note This is Copy DNA not viral DNA—a different beast!1


. The XMRV and phocine distemper virus primers were as described.9 14 The XMRV probe was used as a 5'-(6-carboxyfluorescein)-labelled, locked nucleic acid hydrolysis probe and the phocine distemper virus probe was used

They would have got copy of cDNA whether there was XMRV present or not because they used a primer for the phocine virus---pretty picture time!

As a positive control for the polymerase chain reaction assay, we used nucleic acid isolated from 22Rv1, a prostate carcinoma cell line (American Type Culture Collection number CRL-2505) that was recently shown to contain multiple integrated copies of XMRV and to produce high levels of infectious virus.16 Total nucleic acid isolation and sample preparation from this cell line was as described above for peripheral blood mononuclear cells.

You wont get XMRV DNA from 22Rv1 by treating them like they treated PMBC.you need to use the method below----or guess of course .They did not even have XMRV in their controls.they would have lots of pretty pictures though from smashed up bits of cells

Electron microscopic analysis of culture medium from 22Rv1 prostate carcinoma cells (ATCC CRL-2505) revealed the presence of gammaretrovirus-like particles (Fig. 1). To detect and characterize the biological activity of the presumptive virus, we used a marker rescue assay (10). In brief, HTX cells (an approximately diploid subclone of human HT-1080 fibrosarcoma cells) transduced with the retroviral vector LAPSN (HTX/LAPSN cells) were exposed to culture medium conditioned by confluent layers of 22Rv1 cells for 24 h. The HTX/LAPSN cells were passaged for 2 weeks to allow virus spread. Next the cells were assayed for production of the LAPSN vector by measuring transfer of the alkaline phosphatase (AP) gene carried by the LAPSN vector to nave HTX target cells and to Mus dunni tail fibroblast cells. The Mus dunni cells are wild mouse cells that are infectible by many gammaretroviruses, including xenotropic retroviruses (12). Medium samples from 22Rv1 cells originally obtained from the ATCC and maintained in the M. Tewari lab and from 22Rv1 cells freshly obtained from the ATCC tested highly positive for the presence of replication-

 

[Advocate]

...the Association does not and never has believed CFS is a psychiatric disease.

Thank you. It makes me really happy that you have stated this so clearly.

 

[Gerwyn]

Thank you. It makes me really happy that you have stated this so clearly.

Hi Advocate

Where did this quote come from

 

[Gerwyn]

One reason Annette Whittemore's picture is on my refrigerator door is because of what she said in the televised session of the Chronic Fatigue Syndrome Advisory Committee this year. She said--and I hope I'm using her exact words--she said: "This is not a psychiatric disease, and never has been."

Oh, how I wish that the CFIDS Association of America had made such a clear statement years ago and had continued to say it and were saying it today.

would she go on written record irt would be so useful in the uk

 

[fingers2022]

The study methods are outlined below---no test for viable RNA . No mention of living cells.The rest is hilarious! They were looking for cDNA not DNA! I dont impune your motives but to say that the evidence that needs disclosure is from the WPI is baffling.They have been far more open than others in this game.the fact that this has been ignored is my source of puzzlement.The WPI have endured months of peer review and the others at most a couple of weeks if not over a g and T.The fact that the RNA might have survived is nowhere near good enough.The science is way against that the odds against survival are massive and they tried to isolate RNA in samples some ten times older ,than had ever been done before without checking its viablity

Gerwyn, Kurt

Your exchanges are fascinating....well they would be if I understood them. Gerwyn, are you now focussing on the testing rather than the cohorts?

Can we do anything about the bad science? Do either of you have any ideas? Can we as a group muster any clout to challenge the UK/Dutch labs? Or do we just ignore it as noise (you two seem not be doing this), and wait for some proper studies to report?

Yours humbly,
Satch

 

[kurt]

... I dont impune your motives but to say that the evidence that needs disclosure is from the WPI is baffling.They have been far more open than others in this game.the fact that this has been ignored is my source of puzzlement.The WPI have endured months of peer review and the others at most a couple of weeks if not over a g and T.The fact that the RNA might have survived is nowhere near good enough.The science is way against that the odds against survival are massive and they tried to isolate RNA in samples some ten times older ,than had ever been done before without checking its viablity

Who told you WPI has been more open than the others, WPI perhaps? The comments I have made and others have made about WPI not being open enough does not come from WPI and also does not refer to the two UK studies or the Dutch studies. This is information from other researchers who are attempting at this time to run replication or validation studies. For purposes of this forum that must be considered rumor, I realize that, as this is unpublished information, but I am one of the people who has spoken directly over the phone and even met in person with one of these XMRV researchers. So for me it is no rumor, WPI is being very careful how they work things and what CAA said is true, more information must be disclosed if there is to be validation of the study by outside researchers. Maybe WPI is working with an insider group of favored researchers, I do not know what they are thinking. But that would be very bad for WPI if they are doing that, once word gets out. Anyway, if you want to know what is really happening you have to talk to the other researchers, not WPI.

I fully agree that the UK and Dutch studies need further review, but they were following their interpretation of the Science article which apparently gave the appearance that XMRV could be readily found, after all WPI illustrated multiple forms of evidence and only AFTER the Science article did they begin to talk about how difficult it really was to find, the multiple samples, culturing before PCR, etc. However, their story is not stable, some things apparently are conflicting. This is a very good reason to be questioning and asking about the WPI study.

 

[kurt]

Can we do anything about the bad science? Do either of you have any ideas? Can we as a group muster any clout to challenge the UK/Dutch labs? Or do we just ignore it as noise (you two seem not be doing this), and wait for some proper studies to report?

The best thing to do is to be patient. There are more studies in the pipeline, some very significant, and probably some will be positive and some will mirror the UK and Dutch studies. I disagree with Gerwyn that this is caused by bad science, I think 1) there were problems with the WPI study to begin with, and 2) they added to the confusion by the cryptic language used in the Science article and by leaving out some important information. Eventually we will know what is really going on with XMRV in the CFS population, when enough outside studies are reported and when there are studies that even WPI can not criticize (which has not happened yet). And how that will turn out is unknown at this time although there are enough clues to keep people on both sides of the debate believing they will be vindicated. The joy of the consensus process...

 

[Gerwyn]

if they had read the protocol as virologists they would have noted the amplifaction proceedures--compare the info given by the wpi to the other papers.they made no attempt to follow the protocol.outside researchers merely need to replicate the protocol using blood from a biobank that can be obtained from the wpi in a blinded fashion or the wpi can replicate the others methodology to see if they can find the virus in a known positive sample----no more studies which are unfalsifiable let us get a result one way or another.The other thing I cant understand is that the WPI patients had a range of biomarkers.The others did not.They are objectively different cohorts