• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

But questions the next step in Coffins suggestion, that the XMRV findings in patients are the result of contamination.

This statement is not what you are saying at all. It says that Alter QUESTIONS Coffin's next step regarding XMRV being a result of contamination. Totally oppposite.

That is what I am saying. In fact its what I said - this is the next paragraph

On the other hand he finds it very difficult to reconcile the contamination theory with the inability of the Lo and Mikovits labs to find any contaminants. The details of the WPI's efforts in that arena aren't all known but the Lo lab devised an extremely sensitive assay and then used two of Coffin's IAP tests and still didn't find anything. The pieces of the puzzle do not match up yet.

He finds Coffin's theory pretty compelling but he still can't figure out why nobody has been able to find contamination. That's why this is so confusing and why he is waiting for the other studies to come out.
 
OK so we know that Alter personally finds Coffins arguments about the origins of XMRV 'very convincing'. Which means that he believes that XMRV was created in a lab between 1992 and 1996 from a prostate cancer cell line.

I said 'leaning' and she said 'very convincing' so her emphasis was more forceful than mine but I did go further when I reported that he stated that the MLV's are probably not part of the XMRV family. All I can say is that that's how I remember it.

Actually, Alter was saying that a particular piece of evidence (i.e. Coffin's preXMRV work) was convincing. You have extrapolated this well beyond the context as him making a statment about his overall opinion on XMRV. Or at least you have implied this quite strongly.

It is perfectly normal for one to hold a piece of evidence as strong, but consider the overall weight of evidence as pointing in a different direction. You have selectively ignored the great lengths Alter went to to point out how rigorous they were in ruling out contamination. They found nothing with both of Coffin's IAP tests as well as the far more sensitive mitochondrial DNA test. He specifically pointed out that the possibility of contamination does not mean it necessarily happened. Furthermore, when Coffin's presentation was done, Alter was overheard saying "Is that all you've got, John?"

Yet, you have ignored all of this and instead taken a small snippet of Alter's discussion out of context and extrapolated it beyond any reasonable interpretation. The end result is your portrayal of Alter as "leaning toward contamination." This appears, sans verification, to be a manufacturing of reality.

Lastly, if your memory of the discussion is fuzzy, perhaps it is better to not comment on it at all than to present a potentially false and damaging synopsis of it as truth.
 
End of my visit to this thread until personal attacks on Cort Johnson (who provides us with so much ceases). Anyone with a modicum science can deduce the current research difficulties - facts matter , opinions don't.
 
I'm not going to 'out' anybody but there was someone there that has been very pro XMRV and we were both standing there and we'll see if it shows up.

Amy Dockser Marcus was one of them and she reported

http://blogs.wsj.com/health/2011/04/08/at-nih-chronic-fatigue-syndrome-conference-xmrv-debate-heats-up/

The referee in the fracas was Harvey Alter, part of a different group of scientists who found a family of retroviruses (to which XMRV also belongs) in patients with CFS. Alter said that he found Coffins data about the origins of XMRV very convincing, but questions the next step in Coffins suggestion, that the XMRV/PMLV findings in patients are the result of contamination.

which is actually a bit stronger than what I said and the rest of it mirrors what I reported.

I'm reading both Dr Alter's statement and Amy Dockser Marcus' interpretation entirely differently from what I believe to be your reading, Cort.

I hear that Dr Alter finds convincing the idea that XMRV was accidently created in a lab in the 90's, but he doesn't agree with the conclusion Dr Coffin has drawn that XMRV findings in ME/CFS patients are the result of contamination.

That is a critical difference to patients.

Dr Alter is saying, I believe, that while it is looking likely that XMRV (specifically) is a lab-created retrovirus, evidence still supports that a majority of ME/CFS patients are infected with XMRV (or it's near relatives).

The questions then become: 'How were we infected?' and 'Is this infection the primary infection or a secondary infection?'

I think there may be some semantic issues that I'd like the scientists to clear up. For example, when Dr Coffin wants to dismiss research on XMRV, does he mean the very specific non-variant XMRV or does he mean all the closely related (and variant) retroviruses found by Alter/Lo and more recently by WPI?

A very interesting question -- Could the prostate cancer connection indeed be flawed because the labs were detecting only contaminants (non-variant XMRV), while the ME/CFS connection to HGRVs be correct? Isn't the variation of HGRVs found in ME/CFS patients much greater than that found in PC patients (or do I have that wrong)? Just speculation, but a mighty slapdown for Dr McClure if true.

Maybe people been getting infected with some PMLV for many years, but we didn't figure it out until Dr Mikovitz started looking for XMRV and found XMRV in some folks and very-very-similar-but-not-exactly-the-same PMLVs in many others.

I don't think Dr Alter is anywhere close to abandoning the idea the PMLVs closely related to XMRV are highy associated with ME/CFS.
 
He finds Coffin's theory pretty compelling but he still can't figure out why nobody has been able to find contamination.

Including himself and Dr. Lo, they did not find contamination. You made the comment that he is leaning towards contamination and said that he told you and reporters. Amy did not blog that he said anything of the sort. Neither has anyone else.
 
Including himself and Dr. Lo, they did not find contamination. You made the comment that he is leaning towards contamination and said that he told you and reporters. Amy did not blog that he said anything of the sort. Neither has anyone else.

With regards XMRV I did add this to the end of the sentence "and somehow got into the WPIs samples." - so yes, in that case you are right. On the other hand I also reported his difficulty reconciling the claims of contamination.

On the other hand he finds it very difficult to reconcile the contamination theory with the inability of the Lo and Mikovits labs to find any contaminants. The details of the WPI's efforts in that arena aren't all known but the Lo lab devised an extremely sensitive assay and then used two of Coffin's IAP tests and still didn't find anything. The pieces of the puzzle do not match up yet.
 
Actually I am taking the words out of his mouth and putting them into the paper. That is what he said to me and some reporters and bloggers. One of them specifically asked him about the variability question - whether he felt the MLV's fit into the broad XMRV picture. As I noted he gave several reasons why; the fact that the prostate cancer cell line was grown in mouse tissue and the low variability of the virus seen thus far.

I'm not saying this has to all join together...it doesn't all join together and as I noted Dr. Alter said this is the confusing issue he has ever engaged in. Dr. Alter is mystified by the inability of their lab to find contamination..Regarding his finding - they have not been able to grow the virus and they are awaiting the results of another lab that is looking for DNA integration.

Nor did he say it was over...he said they will know when the BWG and Lipkin test results are in.

No first you said this: Dr. Alter on XMRV and MLVs- in conversation and at one point during his moderation Dr. Alter stated he is now personally leaning to the idea that XMRV was accidentally created in a lab and somehow got into the WPIs samples.

Which did not happen. then you said this: At one point my recollection is that that he did say on the podium that personally he felt the Coffin arguments to be pretty compelling. You are right as well, though, the pieces do not yet fit together for him. I would say he is leaning in the Coffin direction.

And this you said this: Actually I am taking the words out of his mouth and putting them into the paper. That is what he said to me and some reporters and bloggers. One of them specifically asked him about the variability question - whether he felt the MLV's fit into the broad XMRV picture.

You said Alter told reporters and implied Amy was there that he said he was leaning towards contamination which is not what Amy wrote at all. Amy: It says that Alter QUESTIONS Coffin's next step regarding XMRV being a result of contamination.

So which version is it?
 
Actually, Alter was saying that a particular piece of evidence (i.e. Coffin's preXMRV work) was convincing. You have extrapolated this well beyond the context as him making a statment about his overall opinion on XMRV. Or at least you have implied this quite strongly.

It is perfectly normal for one to hold a piece of evidence as strong, but consider the overall weight of evidence as pointing in a different direction. You have selectively ignored the great lengths Alter went to to point out how rigorous they were in ruling out contamination. They found nothing with both of Coffin's IAP tests as well as the far more sensitive mitochondrial DNA test. He specifically pointed out that the possibility of contamination does not mean it necessarily happened. Furthermore, when Coffin's presentation was done, Alter was overheard saying "Is that all you've got, John?"

Yet, you have ignored all of this and instead taken a small snippet of Alter's discussion out of context and extrapolated it beyond any reasonable interpretation. The end result is your portrayal of Alter as "leaning toward contamination." This appears, sans verification, to be a manufacturing of reality.

Lastly, if your memory of the discussion is fuzzy, perhaps it is better to not comment on it at all than to present a potentially false and damaging synopsis of it as truth.


Asleep - I think you are missing the some parts of the paper...I also wrote about Alter this and pointed out that they did both IAP tests.

On the other hand he finds it very difficult to reconcile the contamination theory with the inability of the Lo and Mikovits labs to find any contaminants. The details of the WPI's efforts in that arena aren't all known but the Lo lab devised an extremely sensitive assay and then used two of Coffin's IAP tests and still didn't find anything. The pieces of the puzzle do not match up yet.

I think I reported the conference fairly... here were the main points

Each side had their points. Dr. Mikovits can point to no evidence from contamination after extensive testing of samples and reagents, loads of blinded controls that have tested negative for XMRV (or contamination), antibody, protein, PCR and culture findings, and the fact that theyve never used the 22Rv1 cell lines or any of the other materials that been found to be contaminated

Dr. Coffin, on the other hand, can point to evidence that positive XMRV results in other labs have been due to mouse DNA contamination using a test the WPI does not run (IAP), and to studies suggesting XMRV was created in a lab sometime between 1992-1996. He can show that XMRV is not found in mice (ie did not jump into humans) but that XMRV precursors can be found in a very few mouse strains and one of those strains was used to create the 22RV1 sample. He can also show that all the published XMRV strains are very much alike which suggests they did not infect humans.

Dr. Coffin seems to think that even given the evidence to date the WPIs XMRV finding must be a contaminant (but cant prove it) - while Dr. Mikovits appears to think that, whatever else anybody else has found, her evidence indicates that the XMRV in her samples must have come from the patients (not the lab). They are really making very different arguments.

The one thing everybody seems to agree on is that the contamination issue will be resolved by the BWG and Lipkin studies.

and this from Dr. Mikovits

I asked her about the Satterfield interview and she felt he was simply wrong. She had explanations for every question I asked. Dr. Mikovits stated she has been unable the get the genetic variability data published and into GenBank so that the researcher's can start using it in their analyses (she stated there are just six fully sequenced strains of XMRV) but she does have two papers coming out; one on an immune signature associated with XMRV positive patients and one on an antibody for test for XMRV. (The antibody test will not feature Dr. Bagni at the NCI.) She noted there are researchers doing exact replicates of the WPI experiment (Univ of Alberta and De Meirleir and others). Both she and Annette Whittemore remain very confident in their findings.

During the questions I went right down the question and basically said what they said.

This
Furthermore, when Coffin's presentation was done, Alter was overheard saying "Is that all you've got, John?"

was a joke as in - after a pretty powerful performance - he asked is that all you've got?
 
I've been following the XMRV story very closely, and I found Cort's article a pretty balanced summary of what I saw of the conference, in relation to the Coffin - Mikovits debate.
He also reported some useful tidbits of helpful and positive XMRV news that wasn't in the conference video.

I think we should be careful to separate Cort's work from what he is reporting, when criticising the article.
Otherwise it's very confusing for everyone reading this discussion.
So, in other words, if Cort is reporting what he saw and heard, but we don't like what he saw and heard, then that's not a reason to attack Cort's reporting.
There's always room discussing what the facts are, and this is a good place to do it, but I don't see the need to attack Cort's reporting just because he isn't emphasising or promoting our own particular view point.

The only bit of Cort's article that I was surprised to read was about Alter leaning towards Coffin's opinion, as this isn't the impression I got from watching the conference.
In the video, Alter said that he found both Coffin's and Mikovit's work strong (or words to that effect - I can't remember the exact words used), and that he is satisfied that the whole issue will be decided in Lipkin's study.
He was very careful to sit on the fence in the video (in a balanced scientific way because he knows that he doesn't have the answers), and came across as very open minded. He still fully supports his own (and Lo's research), and said that Mikovit's work is very strong (or words to that effect - I can't remember if he used the word 'convincing' or 'strong' or whatever.) But he also had positive words to say about Coffin's work, and appeared to be very impressed with it.

I'm very keen on XMRV research to be given all the support it needs, and I was annoyed by Coffin's statement that XMRV should be dropped. This just seemed unscientific. But I think I might understand where he might be coming from. I think he might genuinely have convinced himself, based on the research findings, that XMRV has not spread through person to person infection, is not found in the 'wild' (i.e. it doesn't exist outside of cell lines), and is not found in CFS patients.
If Coffin were to only consider the recent prominent research, along with all the negative studies, then I think he has a very convincing case.
But as we have been following Judy's research so closely, then we know that he hasn't incorporated the whole scientific picture in order to come to his point of view. If he had then he would still be open minded about XMRV.
But I believe that he could have come to his decision about XMRV, honestly, purely based on the research which he has been involved with, along with the negative studies and the Hue paper etc.

The recent negative XMRV research (or what I consider to be negative) is actually very strong (as far as I understand it). But it is not definitive, and doesn't prove anything about Mikovits' research. Personally, I am still convinced by Judy's research, based on the entire scientific picture. (I don't include all the negative XMRV studies, when I talk about 'strong' negative research, but I'm talking about the Hue paper, and the recombination paper, and the prostate cell line paper.)

Alter is very much in favour of the Lipkin study deciding the outcome of the science, and this is what he is relying on to settle the issues. He was careful not to take sides in the conference video.
I think there's not much point in us arguing about some of these issues, because it will all be played out in the science.
 
Glad to see the general consensus is most people believe there appears to be SPIN in this article written by Cort. Also some funny business with Coffin wanting to leave XMRV behind without any scientific support for reaching his conclusion. Coffin hasn't proven that XMRV hasn't infected humans! The consensus is that XMRV does infect humans.

Hard to imagine XMRV is getting a fair shake when articles we read are loaded with SPIN, and retro virologists are claiming they want to move on from XMRV without proving it can't infect humans, or hasn't infected humans. Which is what the current consensus is of course.
 
cort, you wrote this in the article: "She [Mikovits] suggested that a few amino acid alterations in the LTR regions of the virus (as I remember :)) would be enough to make the antiretrovirals that are currently available ineffective in humans."

can you tell what this means?

thanks!!!!

rrrr
 
cort, you wrote this in the article: "She [Mikovits] suggested that a few amino acid alterations in the LTR regions of the virus (as I remember :)) would be enough to make the antiretrovirals that are currently available ineffective in humans."

can you tell what this means?

thanks!!!!

rrrr

I wish I could :)...what it meant to me was that the fact that antiretrovirals aren't having as positive an effect in patients as they are in the lab against XMRV could be due to very small changes in the amino acid structure of the strain that a person has; ie you can't really use the fact that most people aren't getting well on them as a reason that XMRV is not there - they will need more tweaking...
 
Asleep - I think you are missing the some parts of the paper...I also wrote about Alter this and pointed out that they did both IAP tests.

Cort, I am aware that you mentioned some of these things after claiming that Alter is now leaning toward contamination.

In the parlance of logic, it is known as poisoning the well. Or, one could liken it to sprinkling a few flower seeds of truth in a field that has just been salted with hearsay and napalmed with innuendo.

This was a joke as in - after a pretty powerful performance - he asked is that all you've got?

Perhaps it was a joke. I do agree that Coffin did some terrific performance art, though. Quite the dramatist. Seemed a bit out of place at a scientific conference, but I digress.
 
Cort, I hope this isn't off-topic as I can't remember whether Dr Mikovits said it after her debate with Dr Coffin or later, but at one point in a discussion period she said that regardless of whether people think XMRV is a contaminant or not, patients can't wait three years for Dr Lipkin's study results to come in and it's time to start right now with clinical trials of antivirals, even if not antiretrovirals.

This, of course, is of huge interest to all of us. Was there any further comment off-camera about that that you can pass on?
 
I removed this statement from the article

and somehow got into the WPIs samples.
so that I will sleep better:). It is my strong recollection that he does not believe in the family theory and he was directly asked -- something to the effect of ...weren't the MLV's supposed to simply reflect more of XMRV's variability.. and his answer was that he now guessed not. I'm going to stick with that. It is my recollection...I don't have tape on that (I forgot to turn my recorder on until later) and if it's wrong it's wrong and I apologize.

On the other hand Dr. Alter did in conversation mention the two reasons that have struck him... the passage of the cell line through mice and the lack of genetic variability in XMRV... the second in particular suggests XMRV is not a human pathogen. If Dr. Mikovits can somehow get that genetic variability data out into publication, that would, as I have noted change everything. Other than that its up to those studies.
 
Cort, I hope this isn't off-topic as I can't remember whether Dr Mikovits said it after her debate with Dr Coffin or later, but at one point in a discussion period she said that regardless of whether people think XMRV is a contaminant or not, patients can't wait three years for Dr Lipkin's study results to come in and it's time to start right now with clinical trials of antivirals, even if not antiretrovirals.

This, of course, is of huge interest to all of us. Was there any further comment off-camera about that that you can pass on?

Like I said I wish I had remembered to turn on my recorder....but my impression that they are moving very strongly in that area. They feel that that's the next step and that's what they are concentrating on. I don't remember anything specific about treatment trials or specific drug companies. They are both completely confident in XMRV. Its really quite stunning to see the confidence on both sides :).
 
I encourage everyone to watch the YouTube videos of what these different researchers actually said. From what I saw, I did not think Alter was "leaning" towards XMRV being a contaminate. He was very moderate in his moderation. And funny, too.

And what the heck? Coffin thinks people with ME/CFS are really ill and that there may be a different retrovirus involved why is this not a headline? The point really is to find the cause of this disease, so let's maybe try to find the cause. It's almost assumed by some that a retrovirus is involved in our illness (but maybe not XMRV). To me that is news. That is a shift in the dialog. So let's find the darn thing.

And truly, this supports the WPI hypothesis and all their research to date. That is the story.
 
Coffin hasn't proven that XMRV hasn't infected humans! The consensus is that XMRV does infect humans.

No he sure hasn't.
If it's a lab contaminant, then why do people have antibodies for it?

Hard to imagine XMRV is getting a fair shake when articles we read are loaded with SPIN, and retro virologists are claiming they want to move on from XMRV without proving it can't infect humans, or hasn't infected humans. Which is what the current consensus is of course.

There is such resistance to new information in people like Coffin. He's like the Catholic church in the middle ages... you know the one that placed Galileo under house arrest for pointing out that the earth revolved around the sun. :rolleyes:
 
I encourage everyone to watch the YouTube videos of what these different researchers actually said. From what I saw, I did not think Alter was "leaning" towards XMRV being a contaminate. He was very moderate in his moderation. And funny, too.

I already posted this video once, but here it is again, for those who didn't notice.

At 6:55 Alter says: "The fact that contamination can occur, and nobody doubts that, does not men that it has occurred in any given laboratory. There is as yet NO DIRECT EVIDENCE for contamination in either the Mikovits lab or the Lo laboratories."


[video=youtube;hWN3rkbXCm4]http://www.youtube.com/watch?v=hWN3rkbXCm4[/video]