Cort
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This appears to be yet another study looking to test XMRV positive patients. Joliceur is doing this as well and if the Dusty Miller study gets going he'll be doing it to.
Maldarelli XMRV Study Underway
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Cort
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Its been reported that Dr. Maldarelli is sending the samples to the NCI and WPI for testing....so they are apparently part of the study.
We have had a discussion on this on mecfs - to summarize in a few words, be careful, people, there are problems with this study, and we could be walking into a trap.
To read for yourself, please click this link http://www.mecfsforums.com/index.php/topic,5123.0.html
To read for yourself, please click this link http://www.mecfsforums.com/index.php/topic,5123.0.html
Esther12
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To a certain extent, scientific research should be about setting traps, and trying to disprove theories. I wish a bit more honest trap setting had been put in place with all the other theories that have surrounded CFS.
Some people in that thread seemed to be assuming the only reason for the conflicting data must be bad faith on the part of those researchers struggling to find a link between CFS and MRVs, and I don't think that's true. From Val's report Maldarelli sounded like exactly the sort of researcher we want involved with CFS, and hopefully his work will bring us closer to understanding what, if any, that link may be.
Some people in that thread seemed to be assuming the only reason for the conflicting data must be bad faith on the part of those researchers struggling to find a link between CFS and MRVs, and I don't think that's true. From Val's report Maldarelli sounded like exactly the sort of researcher we want involved with CFS, and hopefully his work will bring us closer to understanding what, if any, that link may be.
omerbasket
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No, Esther, scientific research should not be about setting traps - it should be about finding the truth, whatever turth exists. We are arfraid, I believe, of two things:
1) Researchers who would like not to find XMRV, and would therefore not do everything to find it if it's there.
2) Researchers who would like to find XMRV if it's there, but who's methodologies are not good enough.
1) Researchers who would like not to find XMRV, and would therefore not do everything to find it if it's there.
2) Researchers who would like to find XMRV if it's there, but who's methodologies are not good enough.
Esther12
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I think both of those possibilites are just a part of the scientific process... and I think this strengthens it. It helps us work out what's needed in order to develop a consistent and accurate test for XMRV.
If XMRV is highly correlated with CFS, I just don't think that this could be covered up at this point. If the WPI, Ruscetti, Alter/Lo have tests which can consistently distinguish between CFS patients and healthy controls, then that's a really solid bit of evidence that cannot just be ignored. I think that there are enough big bods on the pro-XMRV side that this issue cannot be covered up. The evidence against an association would need to be strong enough to move these people out of the pro-XMRV camp... and these are good virologists who are not going to be tricked by dishonest work.
I implore people to be very wary of studies that propose to use XMRV+ samples. Using XMRV+ samples would in theory eliminate selection and cohort variables, leaving only methodological differences. In an ideal world this would be great. However, in the politically motivated world of ME/CFS, this is potentially disastrous.
Why, you ask?
There are people and institutions that want XMRV to disappear. They know it is there, so they cannot legitimately disprove it scientifically. Their only hope is to cast doubt on the XMRV association in the public consciousness and hopefully kill it by attrition and perception. To do this they need studies that can be publicly and politically inflated well beyond their scientific merits and misrepresented as calling the positive studies into question. This is exactly what has been done with the zero/zero studies and the contamination studies.
Thus, any proposed study must be evaluated not only on its scientific merits, but also on its potential political and public misrepresentation.
Though the proposed use of XMRV+ samples might be scientifically innocuous, it is potentially very dangerous politically.
Imagine if a study using XMRV+ samples and unvalidated methodology comes up negative. The scientific conclusion is simply that the methods were unable to detect XMRV. Full stop. But the newspapers will loudly and abundantly declare "New study disproves CFS/XMRV association: previous studies shown to be false positives." Never mind that this is wildly inaccurate. The public narrative will have been neatly wrapped up and XMRV will be effectively buried. Don't be fooled.
More reading: http://cfschronicles.blogspot.com/2011/01/nih-study-poised-to-drench-our.html
Edit: Apparently, the linked blogpost has disappeared. I'm leaving it here in case it gets reposted.
Why, you ask?
There are people and institutions that want XMRV to disappear. They know it is there, so they cannot legitimately disprove it scientifically. Their only hope is to cast doubt on the XMRV association in the public consciousness and hopefully kill it by attrition and perception. To do this they need studies that can be publicly and politically inflated well beyond their scientific merits and misrepresented as calling the positive studies into question. This is exactly what has been done with the zero/zero studies and the contamination studies.
Thus, any proposed study must be evaluated not only on its scientific merits, but also on its potential political and public misrepresentation.
Though the proposed use of XMRV+ samples might be scientifically innocuous, it is potentially very dangerous politically.
Imagine if a study using XMRV+ samples and unvalidated methodology comes up negative. The scientific conclusion is simply that the methods were unable to detect XMRV. Full stop. But the newspapers will loudly and abundantly declare "New study disproves CFS/XMRV association: previous studies shown to be false positives." Never mind that this is wildly inaccurate. The public narrative will have been neatly wrapped up and XMRV will be effectively buried. Don't be fooled.
More reading: http://cfschronicles.blogspot.com/2011/01/nih-study-poised-to-drench-our.html
Edit: Apparently, the linked blogpost has disappeared. I'm leaving it here in case it gets reposted.
Cort
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I agree that the bar has to be set very high for any XMRV+ study - they need to be done perfectly. They do appear to be next wave of studies with Joliceur doing that, Miller maybe doing that and now Malderli doing that.....I would be prepared for more. In fact every new study may be going that route after the difficulty some labs have had finding XMRV in untested CFS patients. I know the IAP test worries the WPI. The question for me is if Dr. Malderlli is taking their concerns into account. I don't know if the Miller study is going to go off but it was my understanding that the issues were satisfactorily resolved with the WPI - so it can be done and hopefully Malderli, or whatever, his name is, is doing that. He did apparently say that he was sending samples to them.....???
I don't seen any reason Malderli would not want to find XMRV ? It's more work for him if he finds it and less work if he doesn't. That doesn't mean he's doing the right methodology but I can't imagine if he doesn't want very much to find it. I imagine he would be happy to find it in just 15% of the patients and them go to work on that group......That's all he would need for funding galore....
I don't seen any reason Malderli would not want to find XMRV ? It's more work for him if he finds it and less work if he doesn't. That doesn't mean he's doing the right methodology but I can't imagine if he doesn't want very much to find it. I imagine he would be happy to find it in just 15% of the patients and them go to work on that group......That's all he would need for funding galore....
This is just pure disinformation. There is absolutely nothing to indicate that the potential IAP issues have been resolved. You have no evidence and offer no proof that this issue is resolved, which is why you use equivocal language ("it was my understanding") as a form of plausible deniability: "I wasn't lying, I merely misunderstood or misremembered."
Again, equivocal language to obscure the fact that you are promoting unsubstantiated rumor in order to confuse people into a less cautious position. There are also a number of unsubstantiated reports that the WPI has confirmed that they are not involved. I don't know what the truth is, but I believe caution is the correct position until the WPI officially confirms their involvement.
Where to begin?
First, Maldarelli may in fact want to find XMRV. I don't know. However, his rumored involvement with Coffin, Stoye, etc, certainly makes his intentions suspect.
Secondly, and most importantly, Maldarelli's intentions are irrelevant. What matters is whether he finds XMRV or not, and if he's using unvalidated methods he will likely not find it (no matter how much he may want to). In this case, as my previous post points out, the political fallout will be disastrous.
Lastly, what makes you think that finding XMRV in 15% of patients will secure "funding galore" when those who found it in 70%+ (WPI, Alter) have secured zero funding to date? Could it be that 15% meshes better with the CDC/CAA's beloved "subsets" theory and would put a damper on all this pesky hypothesizing about causation? Could that be why the CAA has finally decided to get involved in XMRV research after 15+ months of fence-sitting and empty rhetorical support?
Cort
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So suspicious! As you probably know I was connected with the study and that is what I was told.
That is what someone on the ME/CFS Forums reported after a conversation with him....so far that is the closest anyone has come to talking to a major party. I agree that caution is key in this field and we should wait to hear what the WPI is saying. I would very surprised if a researcher was lying, though, to a patient that called him up on the phone.
Is Coffin necessarily the devil? Yes, he was involved in the two contaminant papers but he also clearly said they may not apply to the WPI's findings...He's definitely holding his position open. Why not treat him as an objective scientist?
The CDC/CAA subset theory? From my perspective just about researcher in the land from the past 20 years believes there are subsets....And what does that have to do with causation??? Finding subsets to me provides a clear pathway to uncovering causation.
In any case 15% is just a number I threw up and I did that to illustrate how dynamic a find XMRV will be once it hopefully gets validated. What I was saying was that validating XMRV in just 15% of patients would be enough to spark ample interest in XMRV and provide funding...Obviously it has to be done by several labs and a consensus get reached in the research community. The point I was trying to make, though, was that its in the best interests of most retrovirologists to find this bug.
Whether they have the right tests is another question. This is a fast-breaking field. Dr. Mikovits noted that her concerns about the IAP test rested on a recent paper and recent presentation- it may be that not everybody to date with these findings.
I think you missed the Glaxo SmithKline study the CAA is participating in that started about six months ago.
Where is this information coming from? From the WPI? From Malderelli? From what I have gathered from researching this a bit is that the WPI has not said they are involved. I'd be interested to know who reported samples were being sent to the WPI.
Cort
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Someone whose name I forget on the MECFS Forums who called him up and spoke to him.
Indeed, it is! It wouldn't be suspicious if it were a handful of isolated incidents, but you do this continually. You have been called out on it many times before, and yet you persist. I am merely trying to elucidate for the casual reader how disinformation manifests itself on this forum.
To wit, the science in support of the XMRV finding is very strong and still virtually unscathed. However, this forum is rampant with "misunderstandings" and "mis-remembrances" and "Gosh darn this science is hard, so I guess everyone's research and conclusions are equally valid!" moments. They serve to insidiously and uniformly undermine the XMRV findings through confusion and doubt. In the end, they deflate crucial and warranted support for XMRV.
William Reeves is a "researcher" who lied to Congress. Some people will go to extraordinary lengths to keep this disease buried. Sociopaths abound, especially in the upper echelons of society. This generic appeal to human integrity is not convincing.
That said, I'm not accusing Maldarelli of lying. I don't know what was really said on the phone, nor do I know for sure whether or not the WPI is participating.
Since we cannot divine someone's intentions, we can only guess based on their actions. Coffin may be a good scientist, but he has put himself at odds with many PWC by saying a few squeamishly suspicious things and associating with very provocative characters (Stoye, McClure).
To avoid side-tracking this discussion, I'm not going to get into this issue further at present time.
As I've pointed out many times, this bizarre idea that all scientists are out for scientific truth pervades this forum. It underlies the false equivalency frequently applied to the negative XMRV studies. This belief shows up in statements like "Everyone seems to believe their own science is solid, so I guess the picture is really confusing right now and we really know very little about XMRV" (this is an example, not an actual quote).
But the truth is that not all studies are created equal. To treat them as equal, based on the assumption that everyone is striving for the same truth, is nonsense.
For example, Myra McClure has yet to produce a study in which she is capable of finding clinical XMRV outside of a contaminated lab (despite a great many attempts, bless her cold little heart). For her to conclude anything beyond the fact that her methods are incapable of finding XMRV in human samples is patently unscientific. Yet she has been on an extensive media tour this year citing her study and others of equal scientific modesty as conclusive proof that XMRV is not present in CFS. Is she incompetent or is she out to bury XMRV? I don't know, but her actions leave little doubt that she is at least one of these things.
But, to get back to my original point, Maldarelli's intentions are irrelevant to the danger that a study using XMRV+ samples poses. No matter how much he wants to find XMRV, if he uses unvalidated methods that cannot detect wild-type XMRV (which is likely, unless the WPI confirms they are involved using their own methods), the damage will be done. The study will be held up in the press as putative proof that the XMRV link is dead. No amount of pointing out after the fact that this is completely false will heal the damage done publicly and politically.
I guess I did.
eric_s
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Somehow in the last 2 or so weeks i got the feeling that some people have come over here from another place (no idea where that could be 
) to attack this forum, respectively a person that is some sort of a red rag to people over there.
I'm only guessing, coud be right, could be wrong.
It really is an interesting question what the WPI is thinking about the Miller study, the IAP method and the Maldarelli study and i would like to hear this information from the source.
So i've written to Dr. Mikovits about 10 days ago, asking that question. Unfortunately, i didn't get an answer. I have only written to the WPI once before, last spring, and didn't get an answer then neither, even though my emails were short in order not to waste their time too much and polite. I'm not blaming them, i know they are there to work and can't answer any person with CFS or an interest in these things all the time.
So... is there any verifiable information about what the WPI's stance really is? I was happy about the news that Dr. Miller wants to do such a study and thought Ecoclimber has done a great job. Plus i thought a good part of the people posting on ME/CFS Forums have not acted in a very smart way in the discussion about that study. But if the WPI really would discourage people to participate in that study, then me too, i would not participate (have not tested for XMRV yet, so i would not qualify anyway).
Our situation is more than complicated and difficult enough already. If we want to succeed and get out of this mess, we can't spend time and energy on following false leads, we need to know the facts, and it will also not be helpful if our community is fragmented and cannibalizing each other, so please provide clarity about the WPI's positions on the Miller and Maldarelli studies, whoever is able to do that.
I agree more negative studies won't help us, but also it won't help to make enemies out of capable researchers, give a bad impression of the ME/CFS population and have no studies done at all. We need as many good studies as possible.
) to attack this forum, respectively a person that is some sort of a red rag to people over there.I'm only guessing, coud be right, could be wrong.
It really is an interesting question what the WPI is thinking about the Miller study, the IAP method and the Maldarelli study and i would like to hear this information from the source.
So i've written to Dr. Mikovits about 10 days ago, asking that question. Unfortunately, i didn't get an answer. I have only written to the WPI once before, last spring, and didn't get an answer then neither, even though my emails were short in order not to waste their time too much and polite. I'm not blaming them, i know they are there to work and can't answer any person with CFS or an interest in these things all the time.
So... is there any verifiable information about what the WPI's stance really is? I was happy about the news that Dr. Miller wants to do such a study and thought Ecoclimber has done a great job. Plus i thought a good part of the people posting on ME/CFS Forums have not acted in a very smart way in the discussion about that study. But if the WPI really would discourage people to participate in that study, then me too, i would not participate (have not tested for XMRV yet, so i would not qualify anyway).
Our situation is more than complicated and difficult enough already. If we want to succeed and get out of this mess, we can't spend time and energy on following false leads, we need to know the facts, and it will also not be helpful if our community is fragmented and cannibalizing each other, so please provide clarity about the WPI's positions on the Miller and Maldarelli studies, whoever is able to do that.
I agree more negative studies won't help us, but also it won't help to make enemies out of capable researchers, give a bad impression of the ME/CFS population and have no studies done at all. We need as many good studies as possible.
lansbergen
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eric_s wrote
Dr Yes has gotten an answer. He posted about it on the public part of the ME/CFS forum.
Dr Yes has gotten an answer. He posted about it on the public part of the ME/CFS forum.
eric_s
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Ok, i'll check this out, thanks. Even though it would be better to have it straight from the WPI, of course.
eric_s
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Lansbergen, could you please direct me to that post. I didn't find it at first glance. If you don't want to post a link here, please send it to me by pm. Thanks.
lansbergen
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akrasia
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Eric S. wrote:
There are several of us who hold dual membership, as I think you do as well. ME/CFS forums has been in existence since June of 2010 and there has been plenty of exchange between members of both, sometimes heatedly. In fact, the person you refer to a red rag, charming locution that, Cort, is a member of both and has participated in some recent arguments on ME/CFS, as is his right. And Eric S., "poor Cort" has been the participant in very intense dialogues for quite some time, at least since the Science paper was published.
While Cort is the owner of this forum, does he speak ex cathedra to you, do you wish to be a mere "courtesan" His arguments and blog posts are often quite controversial to some of us. Should we not offer critiques?
Heidi Bauer in the most recent edition of her blog, cfschronicles, makes it quite clear about why the WPI cannot directly endorse or criticize other scientist's projects. On the other hand, Heidi Bauer has a long association with the WPI, and, while she doesn't and shouldn't speak for them, those with eyes to see can draw certain conclusions, specifically, that xmrv+ status is our capital to be spent wisely.
No one should participate in projects without thinking about the implications of the protocol, the scientist's associations with other individuals and institutions, possible biases, and the specific political context we find ourselves in at this moment, all outlined and described extremely well by Asleep.
Somehow in the last 2 or so weeks i got the feeling that some people have come over here from another place (no idea where that could be
I'm only guessing, coud be right, could be wrong.Somehow in the last 2 or so weeks i got the feeling that some people have come over here from another place (no idea where that could be
I'm only guessing, coud be right, could be wrong.
There are several of us who hold dual membership, as I think you do as well. ME/CFS forums has been in existence since June of 2010 and there has been plenty of exchange between members of both, sometimes heatedly. In fact, the person you refer to a red rag, charming locution that, Cort, is a member of both and has participated in some recent arguments on ME/CFS, as is his right. And Eric S., "poor Cort" has been the participant in very intense dialogues for quite some time, at least since the Science paper was published.
While Cort is the owner of this forum, does he speak ex cathedra to you, do you wish to be a mere "courtesan"
His arguments and blog posts are often quite controversial to some of us. Should we not offer critiques?Heidi Bauer in the most recent edition of her blog, cfschronicles, makes it quite clear about why the WPI cannot directly endorse or criticize other scientist's projects. On the other hand, Heidi Bauer has a long association with the WPI, and, while she doesn't and shouldn't speak for them, those with eyes to see can draw certain conclusions, specifically, that xmrv+ status is our capital to be spent wisely.
No one should participate in projects without thinking about the implications of the protocol, the scientist's associations with other individuals and institutions, possible biases, and the specific political context we find ourselves in at this moment, all outlined and described extremely well by Asleep.
eric_s
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Yes, i hold dual membership as well, but only since about 2 weeks and i have never posted on ME/CFS Forums so far. I signed up because i thought i want to ask some people about the Miller situation and some other things. But then i have not used it so far.
I don't mind people visiting and posting on both forums at all though and it wouldn't matter if i did anyway, but i think it does not make sense to have "personal wars" going on. In the end we all share at least one problem and one goal with each other and should work in the same direction.
I can't speak for Cort in any way, but i think he does a lot of good work and deserves credit for that. And if you are interested in my opinion, there does not seem to be less "cult" about certain members on ME/CFS Forums than over here. I have never seen Cort controlling the discussions that go on here, i feel totally free to have and voice any opinion i might have, as long as it's done in a decent way. And if at times there is moderation, which is very rare, i can't remember Cort doing it, at least not directly.
Plus i think he was very happy to get his XMRV test result and i can't remember him talking XMRV down. Not at all. So i don't really get why some people on ME/CFS Forums call him a denier.
But it's a free world and it's good everyone is free to start a forum and decide where he wants to participate.
Thanks for telling me about Heidi Bauer's blog.
I don't know if it can really change something, if XMRV+ people don't participate in studies, as there have been plenty of negative studies already. Studies looking at already tested subjects are not the only possbile type of study. But i agree, if there is a reason to have doubts about a study, it might be wise not to participate. I would follow the WPI's recommendations on this issue. But i also expect the WPI to move forward and prove their case once and for all. They too are not above critique, nobody is. If they are right, i hope they will all win nobel prizes and be famous (if they like), but as far as i'm concerned this is not over yet. Even though i have believed their "claims" from the start and after Lo et al. came out i said now it's time to celebrate. I have not changed my position since, but to be honest, i was disappointed by their results in the XMRV Blood Working Group so far. This does not mean i have not donated to them, i have, and if i can i will do so again, unless things change and i would have to think they are wrong. They are the best effort coming out of the ME/CFS community so far, in my opinion.
I just don't see what could motivate someone like Dr. Miller to deliberately do a bad study. But of course you could also do a bad study without intenting to do so and it could hurt. I just think that if we can, we should try to win as many people like him as possible. This will get us where we want to be, in my opinion. I'm very happy we have Lo and Alter, for example.
I have not read Dr. Yes' post by the way, i hope i can do it tonight, i'm pretty stretched at the moment.
I don't mind people visiting and posting on both forums at all though and it wouldn't matter if i did anyway, but i think it does not make sense to have "personal wars" going on. In the end we all share at least one problem and one goal with each other and should work in the same direction.
I can't speak for Cort in any way, but i think he does a lot of good work and deserves credit for that. And if you are interested in my opinion, there does not seem to be less "cult" about certain members on ME/CFS Forums than over here. I have never seen Cort controlling the discussions that go on here, i feel totally free to have and voice any opinion i might have, as long as it's done in a decent way. And if at times there is moderation, which is very rare, i can't remember Cort doing it, at least not directly.
Plus i think he was very happy to get his XMRV test result and i can't remember him talking XMRV down. Not at all. So i don't really get why some people on ME/CFS Forums call him a denier.
But it's a free world and it's good everyone is free to start a forum and decide where he wants to participate.
Thanks for telling me about Heidi Bauer's blog.
I don't know if it can really change something, if XMRV+ people don't participate in studies, as there have been plenty of negative studies already. Studies looking at already tested subjects are not the only possbile type of study. But i agree, if there is a reason to have doubts about a study, it might be wise not to participate. I would follow the WPI's recommendations on this issue. But i also expect the WPI to move forward and prove their case once and for all. They too are not above critique, nobody is. If they are right, i hope they will all win nobel prizes and be famous (if they like), but as far as i'm concerned this is not over yet. Even though i have believed their "claims" from the start and after Lo et al. came out i said now it's time to celebrate. I have not changed my position since, but to be honest, i was disappointed by their results in the XMRV Blood Working Group so far. This does not mean i have not donated to them, i have, and if i can i will do so again, unless things change and i would have to think they are wrong. They are the best effort coming out of the ME/CFS community so far, in my opinion.
I just don't see what could motivate someone like Dr. Miller to deliberately do a bad study. But of course you could also do a bad study without intenting to do so and it could hurt. I just think that if we can, we should try to win as many people like him as possible. This will get us where we want to be, in my opinion. I'm very happy we have Lo and Alter, for example.
I have not read Dr. Yes' post by the way, i hope i can do it tonight, i'm pretty stretched at the moment.