You may wonder why the CAA treats XMRV the way they do... So:

[omerbasket]

When did the CAA actually learn that the Science paper was in the process of coming out? I believe there have been discussions on here regarding that. So if this was written in July 2009 and the paper came out in October 2009 (3 months), I would think they would have been aware of a possible retroviral link being reveiwed.

This is very interesting. I have to say that we don't know if the CAA knew about this study when Dr. Vernon's stuff was written.
I will however add that the study had been in the press since Aprial 2009 (if I remember correctly) and moreover, you can see in the following video, which is from April 2009 that although Dr. Mikovits doesn't speak about XMRV, she says:

The particular genes we're looking at are handed down from parents and grand-parents, but they are also changed by the environment, by viruses. Viruses and pathogens are very smart [...] they want to avoid the immune response cause that's it's job. So they [the immune genes] litterally are modulated or changed by viruses so that they can't respond. And we've made some discoveries as to what viruses are there changing these receptors, so even if you don't inherit it genetically you're showing it by your response.

http://www.youtube.com/watch?v=TRtxMYI-zKg&feature=related
http://www.youtube.com/watch?v=gYUE7_UZ_O0&feature=related

So, I don't know if it was such a big secret in the scientific community back then, but anyway, unless we know that the CAA knew about it, we can't blame them for that particular thing.

 

[Robyn]

I'm also curious what the timeframe was when the CAA found out that research was beginning on this new possible retroviral link.

 

[dannybex]

But there is no research that does say that. It couldn't possibly say that.

From 1993:

"CONCLUSIONS: The HTLV-II gag gene sequence was not a marker for CFS in this small study of well-defined patients, nor did other characteristics of the patients and controls support the hypothesis that a retrovirus, transmitted by usual modes, was a cause of CFS."

Yes, this study was tiny, it was based on the faulty CDC guidelines for the definition of CFS, but it was still published research. And who knows what else is out there. This was just a 30-second google search.

http://www.ncbi.nlm.nih.gov/pubmed/8420441

 

[omerbasket]

And since no research had yet (until the WPI's one that might) found the cause of ME/CFS, if she meant what you think she meant, than she should have said that stuff about everything that was researched and not found as the cause. But it not something you can say! Because that doesn't suggest it is not the cause, especially when you talk about "viruses" or "retroviruses". There are many kinds of them! How can proving that one does not cause ME/CFS, have any effect on the possibility that another one does?
And not only that. They didn't prove that one virus or another virus does not cause ME/CFS.

So why even saying that research suggests that it is not caused by a retrovirus? There is no basis whatsoever for that.

P.S: Again, listening to the CDC crap, when you know what they are doing there about ME/CFS... To me, that sound very bad.

 

[V99]

What, one bunch of scientist says that and that's the end of looking. Never mind the bias, bigotry, prejudice and fraud. That is no excuse, and should never have been said by those who authored the study.

 

[garcia]

Of course they don't know what's out there...and still don't. CFS/ME can have many, many causes, and probably does, but I'm taking this to mean that she was saying research up to that date suggested that it is/was not caused by a retrovirus.

"Shown" to me is akin to proven, rather than "suggested".

 

[Eric Johnson from I&I]

I think you're taking that particular quote the wrong way. She's listing the state of the art of research for CFS, which was that it's not a retrovirus.

I don't like CAA, but I agree with Caledonia. Vernon is just reporting what the thrust of the various papers has been. In science speak, you sometimes just report what papers say. The fact that some of them might be wrong is simply understood unless you say otherwise - "Dr blah *convincingly* demonstrated..." or "Blah blah had been the common belief since whenever, but in a series of strong papers it was demonstrated that...". Biomed PhD classes, which I dabbled in briefly without being enrolled, consist largely of everyone discussing papers and trying to rip them up. And I think most students are fairly surprised, as I was, by just how many papers can be ripped up or semi ripped up by old hands who know the game. I had certainly known that some papers were wrong, but I didn't quite realize just how many were totally unconvincing, or at least questionable, from at least one defensible perspective. So, the potential wrongness of all past findings is drummed into everyone's head over and over.

 

[justinreilly]

That would be rediculous. That is because of two reasons:
1) We know how the CDC's studies regarding ME/CFS, especially under the administration of Dr. Reeves, are worth. And they didn't even replicate her study!
2) It's not only that not proving that one virus causes ME/CFS doesn't prove that it does not causes ME/CFS, especially when you do not replicate the study that did found the association (how funny, does someone see resemblesness to what's happenning today?); It's also that even if you prove that one retrovirus does not cause ME/CFS, it says nothing, nadda, about the possibility that other retroviruses do cause ME/CFS. Especially since a retrovirus can explain every single symptom of ME/CFS. And anyway, let's say that in the 17th century I would have proven that tuberculosis is not caused by streptoccocus. Would that say that it is not caused by a bacteria? It would just say that it is not caused by streptoccocus. And in the ME/CFS case, they didn't even prove that the Defrietas study got it wrong.

Exactement! I totally agree with Garcia and omerbasket.

Vernon goes on to state:

Sadly, the endeavours seeking to define what CFS is, have been characterised by false leads and dead ends. That is, innumerable small, cross-sectional case-control studies have failed to support plausible hypotheses of an infective, immunological, neurological, endocrine or metabolic disorder (reviewed in 10, 11).

She says she's talking here about 'pathophysiology', not just etiology. Thus she's saying that there isn't support in the literature for 'infective, immunological, neurological, endocrine or metabolic disorders" or pathophysiology in ME. This is patently wrong and she knows this.

Sure, some studies- mostly those using bogus Oxford and Reeves (co-authored by Vernon) definitions- have failed to find evidence of these disease mechanisms. But according to Komoroff, there are more than 4,000 articles in peer-reviewed med journals showing frank pathology in these very body systems.

 

[markmc20001]

I thought messed up DNA could cause health problems? Seems to make sense. Seems to make sense that a retorvirus could screw up DNA. So why can't a retorvirus, that might screw up DNA, potentiallly cause CFS?

Researchers at the boston childrens hosptial are using a retrovirus to treat an immune-deficency disorder disease(to "fix DNA");

research using retorvirus to treat "bubble boys" below.

http://singularityhub.com/2010/07/22/new-gene-therapy-trials-to-test-cure-for-bubble-boy-syndrome/

 

[jspotila]

She says she's talking here about 'pathophysiology', not just etiology. Thus she's saying that there isn't support in the literature for 'infective, immunological, neurological, endocrine or metabolic disorders" or pathophysiology in ME. This is patently wrong and she knows this.

Sure, some studies- mostly those using bogus Oxford and Reeves (co-authored by Vernon) definitions- have failed to find evidence of these disease mechanisms. But according to Komoroff, there are more than 4,000 articles in peer-reviewed med journals showing frank pathology in these very body systems.

Perhaps this is a misreading of what Dr. Vernon said. The next sentence after the one justinreilly quoted says:

At least five factors account for this lack on consensus between research studies:
significant heterogeneity in the patient groups both within and between centers (11,12);
lack of standardized study protocols, and laboratory methodology;
reliance solely upon small, cross-sectional study designs;
the pathophysiology of CFS and comparable fatigue-related syndromes is likely to be complex and to include disturbances in afferent and efferent pathways of brain-body communication.

Dr. Vernon did not say that there is no evidence of system abnormalities in CFS. She says the studies do not agree. And she lists the reasons why.

It is also important to note the purpose of this document: it is a proposal to connect and consolidate CFS research.

The objective of the Connect & Consolidate CFS Research (C-3R) is to provide broad access to relevant CFS research results and the underlying detailed data attributed to such results. C-3R is based on the premise that scientific discovery in this field has been constrained by small studies, variable diagnostic protocols and data collection instruments, differences in laboratory methods, and the lack of a coordinated multi-disciplinary approach to discovery, replication and validation.

Why would Dr. Vernon be proposing a way to increase researchers' access to data and to improve CFS research, while simultaneously insisting that there's no support in the literature for pathology in the list of body systems? Such an interpretation would make no sense.

 

[judderwocky]

That would be rediculous. That is because of two reasons:
1) We know how the CDC's studies regarding ME/CFS, especially under the administration of Dr. Reeves, are worth. And they didn't even replicate her study!
2) It's not only that not proving that one virus causes ME/CFS doesn't prove that it does not causes ME/CFS, especially when you do not replicate the study that did found the association (how funny, does someone see resemblesness to what's happenning today?); It's also that even if you prove that one retrovirus does not cause ME/CFS, it says nothing, nadda, about the possibility that other retroviruses do cause ME/CFS. Especially since a retrovirus can explain every single symptom of ME/CFS. And anyway, let's say that in the 17th century I would have proven that tuberculosis is not caused by streptoccocus. Would that say that it is not caused by a bacteria? It would just say that it is not caused by streptoccocus. And in the ME/CFS case, they didn't even prove that the Defrietas study got it wrong.

I agree with all this. Additionally I believe DeFreitas has even gone on record saying she found a second retrovirus, that she could never get money to study. Am i correct? The second virus never made it through any studies as far as I know, though she apparently discussed it.

I think its been pretty clear that retroviruses had a lot of potential for this illness. Some recognized that... others didn't.... and we can all see how that's ended so far.

 

[justinreilly]

From 1993:

"CONCLUSIONS: The HTLV-II gag gene sequence was not a marker for CFS in this small study of well-defined patients, nor did other characteristics of the patients and controls support the hypothesis that a retrovirus, transmitted by usual modes, was a cause of CFS."

Yes, this study was tiny, it was based on the faulty CDC guidelines for the definition of CFS, but it was still published research. And who knows what else is out there. This was just a 30-second google search.

http://www.ncbi.nlm.nih.gov/pubmed/8420441

Here is a little more of the abstract:

OBJECTIVE: To assess whether the human T-lymphotropic virus type II (HTLV-II) gag gene sequence, a purportedly new laboratory marker of the chronic fatigue syndrome (CFS), and other possible risk factors for CFS, particularly those associated with retroviral transmission, are associated with well-characterized CFS...
CONCLUSION...
The HTLV-II gag gene sequence was not identified in the blood of any patient or control under conditions in which the appropriate assay controls were positive. No statistical differences were observed between patients and controls in frequency of blood transfusions (10% compared with 7%), median number of sex partners before illness (3 compared with 3), bisexual or homosexual behavior (14% compared with 7%), intravenous drug use (0% compared with 0%), and other factors associated with retroviral infection. CONCLUSIONS: The HTLV-II gag gene sequence was not a marker for CFS in this small study of well-defined patients, nor did other characteristics of the patients and controls support the hypothesis that a retrovirus, transmitted by usual modes, was a cause of CFS.

This paper was authored by Schoenberger and Heinene which by itself is really 'nuff said.

This study used Fukuda (it was pre- Reeves definition), so I don't have a real problem with patient selection.

Defreitas of course said she found a novel retrovirus similar to spuma and HTLV II. They were just testing for HTLV II with different methods, which Defreitas had communicated numerous times to them were ineffective and also looking at some risk factors for HTLV II and/or HIV transmission. They said that these findings don't support the rv hypothesis.

This is a lot different from "delineation of what CFS is not - a muscle disorder, a retroviral infection, a recognized psychiatric disorder..."- the language Vernon used, which is meant to convey certitude, not a suggestion, of what it is not.

It is painful for me, too, to accept that our supposed advocates have done much to hurt us (as well as some things to help us- like Vernon's stand against the CDC study) using money from desperately sick and poor ME patients both to manufacture and distribute propaganda such as this, while claiming that it is representing patients and to pay them (Vernon and McCleary) high salaries to do so. I want to believe they have generally been on our side, but the evidence does not support that view, in my strong opinion.

 

[eric_s]

Don't take this personally, Omerbasket, but in my opinion you are pushing quite hard to interpret Dr. Vernon's words in a way that will support the negative view of the CAA that some people on here, obviously including you, have.

If that was said in July 2009, i don't see much bad about it.

Sure, for it to be absolutely bulletproof she would have had to say "... a known muscle disorder, an infection with the retroviruses XYZ-1, XYZ-2 and ZZZ (random names ;-) ), ...", but she's a virologist and not a lawyer.
I also don't really like the sound of that excerpt you're quoting, but i think we should be careful not to attack our friends.

The fact that she wrote the paper you are quoting from in fact, at least to me, shows that she is doing a lot for us. Also look at the SolveCFS bio bank, for example. To me it seems as if there is somebody at the helm there who knows how to move the science forward.

But anyway, i don't have a problem with you stating your opinion here (and even if i had i couldn't do anything about it). Only if anyone can say what he/she thinks, we can get to the truth.

 

[judderwocky]

Don't take this personally, Omerbasket, but in my opinion you are pushing quite hard to interpret Dr. Vernon's words in a way that will support the negative view of the CAA that some people on here, obviously including you, have.

If that was said in July 2009, i don't see much bad about it.

Sure, for it to be absolutely bulletproof she would have had to say "... a known muscle disorder, an infection with the retroviruses XYZ-1, XYZ-2 and ZZZ (random names ;-) ), ...", but she's a virologist and not a lawyer.
I also don't really like the sound of that excerpt you're quoting, but i think we should be careful not to attack our friends.

The fact that she wrote the paper you are quoting from in fact, at least to me, shows that she is doing a lot for us. Also look at the SolveCFS bio bank, for example. To me it seems as if there is somebody at the helm there who knows how to move the science forward.

But anyway, i don't have a problem with you stating your opinion here (and even if i had i couldn't do anything about it). Only if anyone can say what he/she thinks, we can get to the truth.

He could just as easily assert you are looking away from evidence.

It would seem to me she dismissed retroviral causes for this illness and I think that has played out in the CAA's support of additional research. I don't believe anybody can really argue that the CAA has advocated for this research. They have consistently adopted a laise faire attitude with the studies on hold. They have had comments which even the best apologists appear to think were misguided. I think there is a bias. She might not be intentionally holding to a position that is bad for us, but I don't think her opinion helped either.

Reeves has written many papers on CFS as well. I don't think that simply "doing a lot for us" ... a common refrain i hear in their defense.... is really a convincing argument for this community.

 

[CBS]

Reeves has written many papers on CFS as well. I don't think that simply "doing a lot for us" ... a common refrain i hear in their defense.... is really a convincing argument for this community.

Reeve's CDC efforts versus the Biobank? I wouldn't want to try and defend having drawn that parallel.

 

[John Leslie]

Dr. Vernon should be given an opportunity to explain why her statement was wrong in July 2009... she should also simply adopt a position in support of the possibility that XMRV is the retroviral cause of "ME/CFS".

By the way, I do want to report to the blog community that the lawyers I have consulted have all said that the content of the e-mails I have of Switzer's failure to clinically validate his CDC test with the WPI positives which were given to him may not be disclosed publicly. Since that legal advice was given to me, I have also received e-mail confirmation that at least one team Switzer used to support his data was unaware of the WPI positive samples and confirmed that Switzer did not disclose the existence of the positive samples to them prior to conducting the test and reporting the "data".

Switzer looked for the "laboratory VP62 clone" with the wrong methods. He wasn't even trying to find the "natural XMRV and its variants" using the serology or antibody methods of the WPI. The CDC will wake up and do it right because the blood working group does not want a disaster on its hands.

 

[eric_s]

He could just as easily assert you are looking away from evidence.

Yes, of course he can. My view and his view contradict each other and this may well stay like that. Or it may change.
There will probably never be even one second when everybody in the world is of the same opinion, we have to live with that.
Only Dr. Vernon knows what she is thinking (at least i hope so, you never know:tongue

But here are some more arguments that quite strongly indicate that Dr. Vernon is "on our side", which in case that a statement made by her has to be interpreted because it's not entirely clear, will lead me to rather adopt the "friend" than the "enemy" interpretation.

Dr. Vernon has made efforts that seem very smart to me to make research into CFS easier and increase it's quality, such as the very document we're talking about here and the SolveCFS bio bank.

There is currently a study in cooperation with GlaxoSmithKline (i think Cort mentioned that) that looks into XMRV (it's a retrovirus right?) in CFS.

Dr. Vernon has very strongly criticized the CDC study.

It would seem to me she dismissed retroviral causes for this illness and I think that has played out in the CAA's support of additional research. I don't believe anybody can really argue that the CAA has advocated for this research.

Unless i'm wrongly informed about that, they are doing an XMRV study. What more could they do?
They only started this study after the Science paper, true, and i don't know what sort of research they were doing before. It might be that they haven't looked into retroviruses for some time and that could have been a mistake, ok. But then also don't forget that XMRV hasn't been known for a long time. And we still can't be sure, that it is "it". Even if they had made a mistake when they supposedly didn't look into XMRV for the around 3 years between it's discovery and the Science study, the fact that they have such a study going on now, shows they are not biased against it.

They have consistently adopted a laise faire attitude with the studies on hold.

I think they are doing the right thing there and i don't think they have that kind of attitude. They seem to have been or to still be in contact with the Alter team and they have shared the info that the study will be published after the additional experiments. Let's just wait for the study. If it won't be published or if it is published with a new conclusion, then it's time to ask questions. None of us are Dr. Alter's boss. We can't tell him what to do. We don't know the situation around that paper and there are different possible explantions for what happened, not only one, so we have to be careful. What is the right thing to do if situation a) is actually the way things are might hurt us, if situation b) is true. In the end, i fear, if there really are some people with intentions that are against our interests, we will not succeed in forcing them to produce what we want, we will have to support the people who are willing and capable to help our cause to do that.

They have had comments which even the best apologists appear to think were misguided.

Which ones, please? But i will not stay up for much longer and might not reply, just so you know.

 

[judderwocky]

Reeve's CDC efforts versus the Biobank? I wouldn't want to try and defend having drawn that parallel.

Really? Well that obviously goes without saying because we have a difference of opinion. The point remains, a lot of these individuals feel they are helping us. Exorcists usually think they are helping seizure patients. Intentions mean nothing.

My point is simply that you cannot expect people to believe someone is helping us simply because they meet some of our requests or do some things that seem helpful. At the end of the day you have to be able to separate their actions and realistically take stock of their collective effect. This should be done apart from a consideration of "intentions"... the most damaging individuals in my life have meant well.

 

[judderwocky]

I am so sick of listening to CAA apologetics. If you want to nervously run through every single statement everybody on this board has made and divert more time. So be it. It seems pretty clear to me where they stand.

Letting a pharm company hunt through tissue samples is hardly sponsoring a study.

I'm done with the CAA. They are incompetant. They have proven that to anybody but their most loyal fanatics.


At the end of the day, WPI believed in retroviruses. They hired Mikovits because she had a history of working with retroviruses. That was her field of study right?

The CAA has been consistently betting on the wrong horse. Deal with it and get over it as far as I'm concerned.

I'm not wasting my time helping them or dealing with any more of the nonsense coming from their campaign.

I'm not Alter's Boss. Even his boss though doesn't get to interfere with his research... this is the reason why universities establish tenure systems and the peer review process is supposed to eliminate this kind of interference. The CAA should have raised a few concerns about this... but played along. Thats also obvious.

I really don't care if you give your money to the CAA or not. If it were me, I wouldn't expect to get any new results though.

 

[eric_s]

By the way, I do want to report to the blog community that the lawyers I have consulted have all said that the content of the e-mails I have of Switzer's failure to clinically validate his CDC test with the WPI positives which were given to him may not be disclosed publicly. Since that legal advice was given to me, I have also received e-mail confirmation that at least one team Switzer used to support his data was unaware of the WPI positive samples and confirmed that Switzer did not disclose the existence of the positive samples to them prior to conducting the test and reporting the "data".

Switzer looked for the "laboratory VP62 clone" with the wrong methods. He wasn't even trying to find the "natural XMRV and its variants" using the serology or antibody methods of the WPI. The CDC will wake up and do it right because the blood working group does not want a disaster on its hands.

Thanks a lot for mentioning this, it's very interesting. If what you say is true, then look for the right allies (if you need), please continue to be careful, and take those bast*s down!!!!!! For all of us. Good luck.

Unless they have deliberately put out a crap study to save some time and prepare for releasing the big news, with good intentions. Of course i don't like the truth being hidden, but it might be the right thing to do.