Newly refined test from the Whittemore Peterson Institute

[Wayne]

WPI Press Release

Well, I dunno. I don't really understand most of the science that's been discussed. And I really don't understand most of the politics either. Anybody else feel the same way?:Retro smile:

I guess what I feel while I read all this complicated "stuff" is how grateful I am for WPI. The way I see it, here we have a new and relatively small research institute doing some big stuff. And I suspect this is driving some larger, older, and more prestigious research facilities a little bit crazy. I think I've read that some people think WPI was lucky and stumbled onto their findings. Perhaps that's the case, but wouldn't other research facilities also been lucky if they had just decided to start doing some basic research?

I just feel WPI was started for the right reasons and though I appreciate Kurt mentioning some of his misgivings about how certain aspects have been handled, I think they're doing just fine. From my perspective, I think I would give them an A for overall effort and performance, and raise it to A+ because I get such a strong feeling for their commitment to PWCs. They are my heroes.

BTW, does anybody know how many researchers or research facilities have actually done some basic research on ME/CFS? I hear references to Elaine DeFreitus (Sp), but I've not heard references to others.

Wayne

 

[Kati]

I just feel WPI was started for the right reasons and though I appreciate Kurt mentioning some of his misgivings about how certain aspects have been handled, I think they're doing just fine. From my perspective, I think I would give them an A for overall effort and performance, and raise it to A+ because I get such a strong feeling for their commitment to PWCs. They are my heroes.

Wayne

Well said Wayne! I concur.

 

[Lelvina]

AZT also treats FeLV which WPI found in the virachip study

I would like to add to Koan that one person in this forum went to Mexico and purchased AZT and started feeling better after using it. Not scientific, but hey, if it makes you better, wouldn't you like to take a pill (that is under supervision of a doctor of course) ?

I may be misreading this, but...

Dr. Coffin on XMRV and Chronic Fatigue Syndrome

And its important to note that there are marketed vaccines against a very closely related virus, and thats feline leukemia virus, which has been approved for use and has not 100% efficacy but has some efficacy.

Feline Leukemia Virus, which Dr. Coffin calls 'closely related' (to XMRV, which the above page is all about), was listed as the third ranking virus in the virachip study for CFS/ME by the WPI WPI May 29,2009 presentation (page 13, the right hand side, very small )

So #3 with Clonal TCRg rearrangments, not sure what that means. It also mentions SLEPR results, and that it's a normalized pool.

Anyways. So Feline Leukemia Virus is closely related to XMRV, and Feline Leukemia V. is ranked #3 in the virachip study... And what about AZT?

Googling AZT + Feline Leukemia Virus...

Cat Fancier's Association (Not the most scientific name!) FeLV = Feline Leukemia Virus

The mainstays of treating FeLV positive cats are protecting them from exposure to other diseases, ensuring good nutrition, giving regular vaccinations with killed virus vaccines (but not with a feline leukemia vaccine), reducing stress, controlling parasites, and early and aggressive treatment of any symptoms that appear. There is no specific treatment for FeLV and no known cure. A large number of therapies have been investigated for FeLV positive cats, but most have not shown encouraging results. Anti-viral drugs, such as AZT, show some promise, but are associated with many side effects. A drug that stimulates the immune system, interferon, can be given orally to cats without side effects and may be helpful in many cases.

So the AZT may be working against FeLV which many PWC have! So that may explain feeling better.

 

[gerwyn morris]

reply to kurt with thanks I enjoyed your post look forward to a reply I am having t

Yes, I realized after I wrote that comment someone might point that out, good catch! However, if a contaminant virus is also amplified by the same protocol as the target antigen, then you could have a very high cross-reacting concentration for the eventual WP antibody test. And that is the problem with retroviral hunts, because the HERVs can be very, very similar to the target retrovirus and often cross react.

I suggest anyone interested in this issue read the paper available here: Human RNA "Rumor" Viruses: the Search for Novel Human Retroviruses in Chronic Disease



Did you read my comments on replication vs validation? The WPI study can only be replicated using the same protocol. In my experience as a researcher, validation is a different matter, and requires multiple viewpoints, different types of measures. Otherwise there is no way to know if the original measures are producing false positives (in this case perhaps HERV cross-reactions, contaminant PCR hits or DNA interaction artifacts). WPI clearly understands this idea as they tried to use an MuLV antibody and sequenced two antigens (without explaining the biomarkers they used to select them), as well as an EM study, as evidence for their PCR test. Also, the patient selection criteria is pretty broad given WPI's comments about 98% (hinting 100%) positive for CFS. They appear to be toning that percent down now though. Anyway, by any CFS selection criteria there should be some positives, if WPI finds XMRV in a high percent of samples.



I was referring to the politics of promoting the idea that the XMRV test somehow validates ME/CFS. The science has NOTHING to do with the politics of CFS, and merging them is a bad idea in my view. Those in the UK do have an issue with psychiatrists, clearly, but I think playing to that is very risky behavior, because XMRV could become discredited, and then where will that leave you? ME/CFS must stand on its own and there is already plenty of physical evidence. The case has just not been adequately made yet in the halls of power in the UK, or the US (in fact, pretty much every government).



I don't agree, even in PCR testing you can find something different than you are looking for, this happens with retroviral research due to endogenous forms. See the link above, over 500 citations in that article!

Anyway, this point goes two ways. The same scientific challenge that makes replication and validation difficult also creates risk in the original study. That is one of the reasons validation by different test designs, looking in the same places and at the same dilution, are important. WPI was looking for and trying to build a case for XMRV to begin with. So they have focused on supporting that contention, and have not been as objective perhaps as they might have. And if they made an error, it will be a costly one for them as a result.

Also, any researcher skilled enough to conduct a replication or validation study (two different types of studies as I explained above) should know how to run proper calibration testing with known positives.



I agree, statistical power is very weak in most ME/CFS research. But I think this case will be different. WPI has made some very bold claims. So they will be taken to task and made to prove it. Right now their behavior worries me because of some of the issues I have raised.

You raised the issue of people seeing what they want, finding what they are looking for rather than what is there. I am afraid that may be happening with the enthusiasm for XMRV in the ME/CFS world right now. People are so desperate for validation and treatment that they are accepting things uncritically. If I am wrong, then fine, that will be shown in time. But seeing so many people jumping on a bandwagon like this just reminds me too much of the past, so many false hopes with ME/CFS ...

And the big irony is that there was an earlier breakthrough by WPI from their virachip study, and that is being completely ignored right now, but it was a very promising new direction (the May presentation by Mikovitz).

Thanks Gerwyn, you did raise some issues that should be debated, and I hope I have done them justice.

I,m not sure if I,m using this foremat correctly

Hi Kurt-the tests used in the imperial college study were adapted from tests used to detect htlv 1 and two and HIV-as i ubderstand it the primers used were also specific to these two viruses the effect of these primers and their point of binding on the xmrv rna is not known-Ist variable-- comparing their result to a dna sequence assumed to exist in xmrv is yet another unproven element of their test-i still assert that the tests shown have not yet demonstrated their ability to detect XMRv even if present and need validating against a known sample.i take your point about validating.Replication however does validate the hypothesis that in these conditions XMRV can be detected in these patients diagnosed according to these criterea.What hypothesis was the imperial college study examining.Replication to be scientificly valid should aim to test this hypothesis if not then it is scientifically unvalid if not illiterate.As an aside as a researcher in this field have a look at the controls in the imperial college study the lines are far too faint-they should be off the scale-the test can berely detect in vitro concentrations!lastly the semi structured questionaire used to diagnose cfs patients in the imperial college study is referenced Sharpe et al 1991-On investigation however this study in no way refers to a semi structured questionaire.Perhaps you can obtain a copy this would blow the study clear out of the water as the methodology at the very least is inaccurately referenced and should have been picked up by the peer review process.I also took your point that i misread some of your comments -sorry-before i forget the possibility of cross reactions at the moment is entirely theoretical and it would be for others who dispute the WPI test to demonstrate that we simply dont know.

very best wishes
gerwyn

 

[DysautonomiaXMRV]

So #3 with Clonal TCRg rearrangments, not sure what that means

Hi Lelvina, I found this about Dr Peterson's work, that I think it to do with the above..

''A subset of patients severely affected with ME/CFS with evidence of viral reactivation has been documented to demonstrate a gamma T-cell clonal rearrangement. Studies are currently underway to determine the monoclonality and antigen specificity of this unusual T-cell rearrangement, as well as intensive studies into the possible role of viruses in development of neoplastic disorders in a subset of chronically affected ME/CFS patients.''

Source

I think T-cell clonal rearrangement is linked to Lymphoma, which Dr Peterson has found in patients with CFS in America.

 

[omerbasket]

Well, I dunno. I don't really understand most of the science that's been discussed. And I really don't understand most of the politics either. Anybody else feel the same way?:Retro smile:

I guess what I feel while I read all this complicated "stuff" is how grateful I am for WPI. The way I see it, here we have a new and relatively small research institute doing some big stuff. And I suspect this is driving some larger, older, and more prestigious research facilities a little bit crazy. I think I've read that some people think WPI was lucky and stumbled onto their findings. Perhaps that's the case, but wouldn't other research facilities also been lucky if they had just decided to start doing some basic research?

I just feel WPI was started for the right reasons and though I appreciate Kurt mentioning some of his misgivings about how certain aspects have been handled, I think they're doing just fine. From my perspective, I think I would give them an A for overall effort and performance, and raise it to A+ because I get such a strong feeling for their commitment to PWCs. They are my heroes.

BTW, does anybody know how many researchers or research facilities have actually done some basic research on ME/CFS? I hear references to Elaine DeFreitus (Sp), but I've not heard references to others.

Wayne

I very very much agree. I think that the Witthemore-Peterson institute, and the people in there, are an example for people who achieved something because they really wanted to do it. The WPI was established, as I understand it, for very definitive targerts: to bring relief and to find a cure for patients with neuroimmune diseases. And they showed that it is very much possible to find the cause of a illness, and possibly its cure, if you really want to do that. If anyone suggeest that the Withemmore family tried to gain money and be richer by establishing this institute, I think they sholud rethink about it. Annete Witthemore and her husband are just parents who had an ill daughter, had some money and decided to try and do something by themselves to make their daughter better - and not to wait for a miracle by the sceintific community. After all, there are many diseases that wait for such a miracle for many many many years and it doesn't seem that it's coming. Here, the Witthemore family showed that some people may bring the miracle to thmeselves and to many others. And it seems like they picked up some very good and caring people for their medical staff.

By the way, excuse me for my English mistakes. I'm from Israel, so I'm much better speaking Hebrew...

 

[gerwyn morris]

Different serotypes of XMRV perhaps

Hi Kurt. This is an interesting thought. So the WPI could be picking up a HERV that resembles XMRV, but lacks certain of its genes, and among those are the ones the UK scientists looked for. I know you are not suggesting this is what's happening, but if it were happening, it would be 98+% HERV activation in CFS vs. 3.7% in controls, which would indicate this HERV activation as a biomarker at the least for CFS, possibly even causal. It's the first thing I've heard, apart from fatally flawed techniques in one lab, that could possibly explain the drastically different results in the US & UK studies.

I agree that this could be a possibility -Wessely,s rebuttal of the WPI statement makes interesting reading however He claims that there were no psychiatric patients in the study-The WPI actually stated that there might be patients with PSYCHOLOGICAL problems-The two definitions are not the same, psychiatric in the UK referrs to the psychoses not the neuroses like anxiety and depression.Also the word typical is not used in its normal english context it means typical according to cetain diagnostic criterea.The words typical of CFS patients seen everywhere has no meaning and is not the same as typical of ALL CFS patients.I have years of experience of deciphering this "Scientific legalease".The WPI should publish an appendix of the symptoms reported by its patients and invite wesselly et al to do the same.The hypothesis that they wern,t the same patients can be easily tested.We should not play the labelling game but focus on reported symptoms like any RCT worth its salt would, to enable a baseline comparison to be made, and eliminate yet more variables.I do agree with Kurt that we dont know the extent of variation in the XMRV genome or its mutation rate thats why everyone at the moment should stick to the same test and not one which is generic for retroviruses already known.

 

[Mark]

Imperial Flaws

Gerwyn's earlier post seems to have had trouble with formatting but has some excellent analysis so I thought it was worth emphasising this post (with my highlights in bold):

Hi Kurt-
the tests used in the imperial college study were adapted from tests used to detect htlv 1 and 2 and HIV-as I understand it the primers used were also specific to these two viruses the effect of these primers and their point of binding on the xmrv rna is not known-Ist variable--

comparing their result to a dna sequence assumed to exist in xmrv is yet another unproven element of their test

I still assert that the tests shown have not yet demonstrated their ability to detect XMRV even if present and need validating against a known sample.

i take your point about validating.Replication however does validate the hypothesis that in these conditions XMRV can be detected in these patients diagnosed according to these criterea.What hypothesis was the imperial college study examining? Replication to be scientificly valid should aim to test this hypothesis if not then it is scientifically unvalid if not illiterate.

As an aside as a researcher in this field have a look at the controls in the imperial college study the lines are far too faint-they should be off the scale-the test can berely detect in vitro concentrations!

lastly (edited) NB The last point has been found to be an error, the paper referenced was 1997 not 1991, see 'The Fight is on...' thread...sorry...

If anyone else favours a new thread specifically to collate and list - concisely - flaws and question marks over the Imperial College Study's methodology and stated conclusions, perhaps they can start one?...

 

[thefreeprisoner]

Very OT:

George - I LOVE your sense of humour. Whenever I see your avatar, your comment 'superior doggie sniffs' about the psych lobby trying to scramble a response to the WPI study, comes into my mind and makes me smile.
And this plate licking comment was the icing on the cake of hilarity.

Thanks for the fun... keep posting please...

Rachel xx

 

[fresh_eyes]

@ parvo and the other optimists on here: Thank you so much for staying positive.

It sounded like they had some ass in their britches.

CJB, that is the best expression I've heard in a while.

If I were a pregnant and had CFS, I would get tested for XMRV. If I turned up positive, I would consult with an expert on HIV mother/fetus transmission about birth options and about breast feeding.

Kwietsol, thanks for bringing this up. I've see pregnant women with CFS on other fora. Even if XMRV hasn't yet been *proven* to cause disease, it seems imperative to protect babies from infection with it.

I too find this interesting, and would appreciate Kurt's comments about this website:
http://www.flintbox.com/technology.asp?page=3537

Very interesting link, Levi!

Posted by: Public Health Agency of Canada

The researchers who discovered HERV-BZU have noted its presence in conjunction with disease, and the presence of HERV-BZU in blood might be used as an indicator of the presence of pathogens, including unknown, emerging pathogens for which no specific detection technology exists.

The presence of HERV-BZU could be used as an indicator of exposure to a new infectious agent and useful for tracking disease spread. It could also indicate of the presence of diseases such as Multiple Sclerosis or chronic fatigue syndrome. The measurement of HERV-BZU levels could also be used to determine the effectiveness of different treatments.

Use of HERV-BZU based screening methods might be able to protect the blood supply from prions, infectious agents responsible for transmissible spongiform encephalopathies (TSEs) such as Bovine spongiform encephalopathy (BSE), which is also known as mad cow disease.

It is possible that HERV-BZU might be used as a vector for gene therapy, the insertion of custom genetic material or corrected genetic material into human cells to treat illness and as a vector for other treatments that require the delivery of genetic material into human beings.

 

[Advocate]

Gerwyn's earlier post seems to have had trouble with formatting but has some excellent analysis so I thought it was worth emphasising this post (with my highlights in bold):

Mark - I, too, found Gerwyn's early post (make that plural) very helpful, and I, too, reformatted. But I did it only for my personal use and didn't think to share it with everyone in the forum. What you did was terrific! Especially the bold highlighting.

 

[imready]

After reading everyones comments my mind is just blank. I hate brain fog!!! I read a post and go to the next and can't remember what the first one said.

Soooooooo my question is, what is this new test? I had the test that cost $650 and it came back negative for both. Is this new test something different? I emailed VIPDX to ask this question.

 

[Mark]

Thanks advocate - I'm keen to encourage people to do more of this sort of thing, we have all this wonderful but raw and scattered information that needs pulling together and editing somehow, it seems to me there should be an organic way of doing it together as we go along somehow...

As a case in point, please note that on the main 'fight is on' thread, it's already been clarified that the reference to the questionnaire is actually 1997 in the paper, not 1991, so I've now edited that one out - although checking out both papers neither are too clever, as you'd expect...

 

[kurt]

And by the way, do y'all notice how much of this drama involves women? Batemam, Klimas, Mikovitz, McClure, DeFreitas, etc. I know there are some men: Peterson, Cheney, Reeves, Simon, White, Bell, Lapp, Komaroff. But compared to other scientific discoveries, seems we have more women in the leadership role. I guess that is one good thing. CFS research has no glass ceiling, just no money and no respect. Hmmmm, could there be a reason for that? Could it be that the no respect has something to do with the fact that so many who are taking the lead are women?
Tina

You left out a few important women in this drama. Susan Vernon at CAA, and of course Dr Ila Singh (MD and PhD) of Columbia University and now at the U of Utah Med Center who co-discovered XMRV in malignant prostate cancer samples. And of course Mrs Whittimore. Also 75% of PWC are women. That is the most important figure in my opinion.

But we do need to hear from the males involved also, nobody has a monopoly on CFS research, or treatment. As Dan Peterson says, this is a complicated illness. There are not simple answers, a lot of combined brainpower is needed to solve CFS.

One more thought, I think the involvement of so many women in the XMRV finding, particularly related to WPI, may be one of the reasons that the PR for this finding has been so successful. As females they perhaps have an easier time empathizing with and understanding the pain of so many females with CFS. So they are doing a better job of communicating and stating the case for CFS than previous researchers have. Maybe this is an insight into how to promote CFS, to help with advocacy. Focus more on the women in the medical system, is there an association of female doctors, for example? Female legislators? Maybe that type of target would be good for advocacy organizations to focus on right now. The men just do not 'get it' about CFS unless they are specializing in CFS, or like me they actually have the illness or have a close family member with CFS (which I also have, someone up there wanted to be certain I 'get it'). Before I got CFS I also was a total disbeliever that the illness was real...

Update- I just thought of another one, Dr Huber at Tufts, she is studying the connection between HERV activations and CFS, which in my opinion is somehow related to the WPI XMRV finding, although the specific link is not clear yet. If MuLV type HERVs are involved in CFS, that might explain the differences in the studies, and per reports on this forum those differences are likely to continue in other replication/validation studies not yet reported. So I think the HERV angle may grow in importance, to either find the connection or rule that out. Dr Huber's work might be interesting to watch.

 

[gerwyn morris]

Sorry i forgot

Hi Kurt
I am not questioning the skill of the researchers merely their assay protocols-they are unproven as far as XMRV is concerned.The study did not follow scientific convention in a number of key areas not least in introducing confounding variables.Initially,as you know the AIDs virus could only be detected using one assay method! and that was only due to its fast replication rate and relative genetic stability.Science abounds with examples where the coclusions and theoretical postulates of one study were validated by replication of results in another-I dont see the conclusions of the WPI as unreasonable in the context of the study.The WPI research may well be early stage but i,ve seen far worse now accepted as mainline science.The stroke study involving slow release persantin for example which has changed prescribing policy in the Uk.We must also ask ourselves whether the imperial college study have been accepted for publication in Science with the amount of peer review it underwent-The answer(as you know the peer review process) is categorically No.Why are we therefore conceding that the two studies have equal scientific merit.Whatever its flaws(and i take many of your points) it is many orders of magnitude closer to the scientific ideal than the one from imperial college

 

[kurt]

kurt....perhaps you are right. it is interesting though..i have never been taken seriously by a canadian infectious disease doctor before i showed one the Science article. it seems to hold some weight with even skeptics. i was stunned when a very prominent doctor here agreed to treat me with an antiretroviral if i tested positive to XMRV. XMRV is not endogenous and cannot be confused with one, right?

Correct, XMRV is not endogenous. However, it was probably endogenous in mice at one time, somehow it mutated and crossed over in the recent past. Anyway, the research into endogenous retroviruses is pretty new, in time we may learn that endogenous retrovirus activation can be quite pathogenic.

In a way, this is a 'what's next' situation. Meaning, we have tried treating CFS with antibiotics and antivirals, and any of those can hit on infections that have not even been identified. So maybe anti-retrovirals are next to try. And even if anti-retrovirals do help PWC, that is not proof that they are acting only against XMRV. Who knows what else we have in us...

I guess what I feel while I read all this complicated "stuff" is how grateful I am for WPI. The way I see it, here we have a new and relatively small research institute doing some big stuff. And I suspect this is driving some larger, older, and more prestigious research facilities a little bit crazy. I think I've read that some people think WPI was lucky and stumbled onto their findings. Perhaps that's the case, but wouldn't other research facilities also been lucky if they had just decided to start doing some basic research?

I just feel WPI was started for the right reasons and though I appreciate Kurt mentioning some of his misgivings about how certain aspects have been handled, I think they're doing just fine. From my perspective, I think I would give them an A for overall effort and performance, and raise it to A+ because I get such a strong feeling for their commitment to PWCs. They are my heroes.

BTW, does anybody know how many researchers or research facilities have actually done some basic research on ME/CFS? I hear references to Elaine DeFreitus (Sp), but I've not heard references to others.

Wayne

Wayne, I hope people do not get the wrong idea about my analysis of the WPI press release yesterday. I am definitely NOT against WPI, anyway are we choosing teams? I really am impressed with their efforts, just taking us seriously and investing serious hard dollars in CFS like they did was a break-through. Then running the virachip study, why hasn't that been done before? That produced a mountain of data that will probably take years to sort through, look at all the co-infections? Which ones are critical to CFS? And finally getting a study in Science about CFS, wow, nobody has done that before. Even if there were some errors or the study was too rushed, I am impressed, even a fan. But also I am trying to stay objective, I am a former researcher and know that the process of scientific criticism helps to improve research all around, and that is what I am trying to help with. This situation is made more complicated by the political problems with CFS, and I understand why WPI has taken a type of advocacy role. But that combination is risky. My worry is that some parts of the XMRV study in Science are likely to become discredited, that is what happens in this type of early stage research. And I want to at least try to prepare people for that, think through all the issues now, so we can use this debate to refine and improve our response, collectively speaking.

As far as my own grade, I would give WPI an A for their investment, an A+ for the virachip study, an A- for their Science study and a B- for their defensive handling of controversy thus far, and for not being more clear about potential COI issues. Overall maybe an A-, hopefully that will improve.

 

[usedtobeperkytina]

Yes, I did neglect to mention the other women.

I just believe that sexism has a part in some of this. I know there are women on both sides. But considering the doctor attitudes toward the women with the illness, that their being women means it is more likely to be psychological, I wonder if the fact that many of the researchers are women may have some influence on the attitudes toward that research. I think it likely had a big impact on the CDC guys not willing to go to DeFreitas to see her methods. "We can do our own methods. We don't have to go have a woman teach us how to test for viruses." (No one actually said that, as far as I know. Just wondered if that thinking was part of the problem, and is part of the problem.)

Tina

 

[Robin]

The WPI should publish an appendix of the symptoms reported by its patients and invite wesselly et al to do the same.The hypothesis that they wern,t the same patients can be easily tested.We should not play the labelling game but focus on reported symptoms like any RCT worth its salt would, to enable a baseline comparison to be made, and eliminate yet more variables.I do agree with Kurt that we dont know the extent of variation in the XMRV genome or its mutation rate thats why everyone at the moment should stick to the same test and not one which is generic for retroviruses already known.

Thanks for posting, gerwyn. I learn so much by reading your "take" on things.

I was wondering the same thing: we're dealing with a patient population which may not be homogeneous, and a retrovirus which may be cross reacting with something else, AND has an unknown mutation rate. There are variables all over the place! I'm just waiting to see what the CDC retrovirologists come up with -- they're working more closely with the WPI and don't have the political baggage of ME/CFS research in the UK. So if they find something, even if it's not XMRV but something, we can go from there.

 

[kurt]

Hi Kurt
I am not questioning the skill of the researchers merely their assay protocols-they are unproven as far as XMRV is concerned.The study did not follow scientific convention in a number of key areas not least in introducing confounding variables.Initially,as you know the AIDs virus could only be detected using one assay method! and that was only due to its fast replication rate and relative genetic stability.Science abounds with examples where the coclusions and theoretical postulates of one study were validated by replication of results in another-I dont see the conclusions of the WPI as unreasonable in the context of the study.The WPI research may well be early stage but i,ve seen far worse now accepted as mainline science.The stroke study involving slow release persantin for example which has changed prescribing policy in the Uk.We must also ask ourselves whether the imperial college study have been accepted for publication in Science with the amount of peer review it underwent-The answer(as you know the peer review process) is categorically No.Why are we therefore conceding that the two studies have equal scientific merit.Whatever its flaws(and i take many of your points) it is many orders of magnitude closer to the scientific ideal than the one from imperial college

I thought HIV was only partly stable, it also mutates constantly, even in a host, right?

And I agree the WPI study was more complete than the IC study, but disagree about whether the Science study was sufficient to make conclusions that 'the answer is here,' and to launch the subtle campaign for CFS social and political validation that we have seen from WPI and their supporters. I think the science must be very, very solid in a case like CFS, given how tenuous our credibility is politically. If there are problems with the XMRV study, any social and political validation efforts based solely on XMRV could backfire.

Yes in the early stages like with HIV labs may only have a single method that works for finding a pathogen. But in this case we are talking about a possible pathogenic retrovirus in the blood supply, that requires validation that the XMRV pathogen is a problem.

The IC study did get results with positive controls in vivo (per a follow-on test), they were capable of reading the test and finding XMRV. Unless XMRV is hiding in cells and there is some undisclosed method for cracking those cells built in to the WPI assay that has not been clarified, the IC study should have found something, at least a faint signal. But there can be other explanations for this besides problems with the IC study, as I am sure you know false positives can be complicated, and in this situation we have known problems with MuLV antibody and HERV interactions, abundant in the literature. Until we see several different types of validation studies, all confirming the presence of the entire XMRV genome, IMHO any claims being made are tenuous.

Given that WPI is now focusing less on PCR, I think they know that this will be a long process, and I think they are wise to be promoting the more externally validated testing, a culture study using MuLV antibodies, for patients. Of course a positive on that test is not as good as validated PCR test, but it does show that some MuLV type pathogen is present and that is certainly useful knowledge, we should not have any MuLV type retrovirus active in our bodies. But testing firms should call this an MuLV test and not an XMRV test, particularly if there are problems with PCR testing for XMRV, because if that is true there is no way to be certain that an antibody attached itself to XMRV vs. some other MuLV antigen in the cultured sample.

 

[Andrew]

given how tenuous our credibility is politically. If there are problems with the XMRV study, any social and political validation efforts based solely on XMRV could backfire.

This is one of my biggest fears. Not to mention the emotional impact it can have on pwc.