Nature article about Judy Mikovits and XMRV

[Cort]

I thought Lipkin was doing his own study? Is he also trying to isolate a pathogen (any pathogen) for ME/CFS in addition to coordinating the blinding of the blood work group? Should it bother us that he "debunked" a link between Borneo pathogen and "chronic fatigue"? (is he one of the CDC's go-to-guys for biomedical information debunking? and did that refer to CF or ME/CFS?)

I also thought Peterson had always planned to leave WPI after one year's time? Although I agree that we need to pursue all avenues, not only XMRV. But I kind of thought their clinical side was doing that, because Dekoff-Jones said she was not choosing physicians based on adherence to a particular treatment method but that she expected a variety of treatment methods (with probably an emerging consensus).

Anybody have a status update on Singh?

I think Peterson was going to be there as long as he was working. Corinne, who is doing a blog on her experiences with him, said he just glowed about the WPI when she asked him about. She said he was up two or three days a week putting it together and that he told her it was going to be the best place for CFS patients. I don't think he was ever going to be there full time though; he was going to keep his practice as well. I suppose that could be for his patients in town and because he does Medicare and all that. In any case he was quite excited apparently.

Lipkin is involved in two studies; one with Montoya looking at all pathogens and one he is leading just looking at XMRV in CFS. He is not, to my knowledge, working with the BWG (?).

Yes, the clinical side is its own side. I don't really have any problem with the WPI focusing entirely on XMRV based on what I know. I think I would have done the same thing...opportunities like XMRV, after all, don't come around very often; I think I would have thrown everything at it I could.

 

[justinreilly]

I'm glad Lipkin and Montoya are collaborating on looking for pathogens. According to a NY Times article, Lipkin is the best in this area. His method according to the article is to take all the DNA from a cohort of patients and compare that to controls. He then pulls out the DNA that is common to all the patients, but not found in controls and sees if this is the DNA of a pathogen (existing or new). The article claimed this sorting out of the DNA and then deciding what it was only took less than a week. Obviously it will take longer from start to finish, but this encourages me.

I hope his 'debunking' of Borna virus in ME was real science. It would of course worry me deeply if it were not.

 

[justinreilly]

from the Nature article:

Mikovits says that she kept the XMRV work secret from Peterson over fears he would tell his patients, and left his name off the original Science manuscript until a reviewer questioned the omission. When asked whether that episode contributed to his departure, he says, “I was surprised at the secrecy and lack of collaboration.” As for his motivation to team up with Levy: “I’m just trying to get to the truth. It’s my only motive, because this is such a deserving group of patients who need to know what’s going on.”

Not cool and definitely not cool!

Peterson was a founding contributor, the clinical director. The building has his name on it. Nothing would have gotten off of the ground without his patients or his efforts. Ouch!!!

This article explains quite a bit.

I wish Peterson the very best of luck with Levy.

This strikes me as profoundly uncool too. That sounds just crazy to me. Of course there is more to the story that we don't know.


Jay Levy submitted grant proposals to NIH in the early years and was denied like everyone else. His reputation as far as i know is that he is a brilliant retrovirologist. He discovered HIV on his own at the same time as the others discovered it with huge staffs.

I don't like the wording that his study is a "response" to the Lombardi study. This seems to imply it was a negative study, to me.

Whatever the outcome, I am glad that Drs. Peterson and Levy are on it. They are so smart and knowledgable and we know that Peterson would never do fake science.

 

[acer2000]

I have to say that in theory I agree with the idea that the WPI should focus on more than just XMRV. If they had unlimited resources working on multiple theories in parallel would be great!

But in reality, I can't blame them for how they have pursued this. I mean, they probably started off with no idea what to look for and cast a wide net. But they caught an early encouraging break with XMRV. From that point on, since the evidence looked so good, they kind of have to see it through to the end or else we will never know if it really is the cause.

I mean what would the critics have them do, abandon a promising early lead in effort to spread themselves thin if just in case it doesn't work out? No - if you have a promising hypothesis that seems to be bearing fruit, you see it through to the end! If it doesn't work out, you pick yourselves up and try for something else.

As an aside, I can see how other researchers would be uncomfortable about them talking about unpublished disease associations (Autism/GWI/Vaccines). That probably cost them some credibility that they could have saved had they just spoke of CFS/Cancer. As tempting as it is to address those issues, you have to walk before you run... and as a new unknown institute it was an uphill walk to begin with.

 

[kurt]

I'd like to come out in support of Peterson and state that I don't agree with the WPI's singular devotion to XMRV.

I fully agree with this, in terms of the original stated mission of WPI that Peterson signed on to. I liked their original statements about using systems biology to find the solution, that was a nod to the complexity of CFS.

But they changed their mind and also their mission, and I'm sure being kept out of that decision loop took all of Peterson's power away. Why would anyone stay when you are demoted like that?

In defense of WPI (and you won't hear me defending them often...), the single focus on XMRV may have been partly due to the need to dedicate enough resources to thoroughly explore the issue, so not just a mission choice, also a bow to financial reality. WPI became a retrovirus research institute, focusing on Mikovits' expertise in cancer viruses. Now with their new CFS treatment center, I expect they will have to broaden out again and look at the entire spectrum of this illness, along with all the non-XMRV research.

FWIW, I think the idea that CFS can be explained by a single virus is following the AIDS/HIV model, but the recent proteomic study suggests a Parkinson's/Alzheimer's model may be valid as well. We need labs exploring all angles of CFS. WPI will have to broaden their scope now to stay in the game.

 

[meadowlark]

It's not a fabrication, or plagiarism, to use quotes that have been published elsewhere. This is business as usual at very light lifestyle/homemaker/celebrity mags, and as a magazine factchecker I ran across it all the time. But in a piece this weighty, any quote not said to the writer directly should be attributed back to its original source: e.g. "As Mikovits told The New York Times last year," "As Mikovits wrote in Science," etc. Clarity and precision is as important in journalism as it is in the scientific process.

 

[kurt]

Mikovits has dug in, however, attacking her critics' methods and motives. She says that their distrust of her science stems from doubts about the legitimacy of chronic fatigue syndrome itself.

That is just a preposterous thing for Judy Mikovits to say, is she really that cynical? So if a researcher looking at all the negative studies distrusts her science, they doubt the legitimacy of CFS? I can understand she may feel personally attacked by the changing opinions in the scientific community, but this is not about Judy, it is about XMRV and whether standard PCR tests calibrated to the same VP62 strain she used can validate her finding. She might be doing everything right and still be wrong, something could be going on here she just has no way to know about. This is why we need a broad range of skilled researchers and labs to explore XMRV.

This comment and the underlying belief that researchers are biased that she regularly shares reflects very poorly on WPI in my opinion. I think Mikovits has listened to anger of the the patients and then misdirected that at retroviral researchers, most of whom are not the medical professionals the CFS community has an issue with. These retroviral researchers Mikovits says disbelieve in CFS would like nothing more than to find a new retroviral disease to study.

 

[Mya Symons]

That is just a preposterous thing for Judy Mikovits to say, is she really that cynical? So if a researcher looking at all the negative studies distrusts her science, they doubt the legitimacy of CFS? I can understand she may feel personally attacked by the changing opinions in the scientific community, but this is not about Judy, it is about XMRV and whether standard PCR tests calibrated to the same VP62 strain she used can validate her finding. She might be doing everything right and still be wrong, something could be going on here she just has no way to know about. This is why we need a broad range of skilled researchers and labs to explore XMRV.

This comment and the underlying belief that researchers are biased that she regularly shares reflects very poorly on WPI in my opinion.

Kurt, you have CFIDS correct? There are a few people who come to this forum that don't. This is why I am asking. If you do, I assume you know what it is like to be judged and riduculed for having this illness, not only by doctors, but also by family and friends. Researchers are also human. I think it is safe to say that some of them would not take this illnesses as seriously as they would another, more legitimized illness (with a better name). Further, there have been scientists who have studied CFIDS in the past who ended up with somewhat of a bad reputation just for being involved---More reason not to bother with CFIDS research.

 

[insearchof]

I fully agree with this, in terms of the original stated mission of WPI that Peterson signed on to. I liked their original statements about using systems biology to find the solution, that was a nod to the complexity of CFS.

But they changed their mind and also their mission, and I'm sure being kept out of that decision loop took all of Peterson's power away. Why would anyone stay when you are demoted like that?

In defense of WPI (and you won't hear me defending them often...), the single focus on XMRV may have been partly due to the need to dedicate enough resources to thoroughly explore the issue, so not just a mission choice, also a bow to financial reality. WPI became a retrovirus research institute, focusing on Mikovits' expertise in cancer viruses. Now with their new CFS treatment center, I expect they will have to broaden out again and look at the entire spectrum of this illness, along with all the non-XMRV research.

FWIW, I think the idea that CFS can be explained by a single virus is following the AIDS/HIV model, but the recent proteomic study suggests a Parkinson's/Alzheimer's model may be valid as well. We need labs exploring all angles of CFS. WPI will have to broaden their scope now to stay in the game.

Hi Kurt

In light of media spin and misleading reporting re the Towers study, I agree with others here, that you really have to look long and hard and question the validity of content. I would encourage discernment and deferr out right acceptance of what was reported there as factually correct.

The WPI is <than 1yr old isnt it? It was set up with a very modest amount, of private and some public funding. I believe though that they will need to continue to raise significant funds to continue research, let alone clinical operations.

Like most corporates, they have a mission statement and vision for the future and they will have project role outs spaced over time according to resources. When resources are negligible, as they are in an ambitious venture of the ilk of WPI, project role out will be slow. It does not follow however, that a decision to allocate a lot of resources to a project, means that it has changed it's focus or mission. I have not read anything to suggest otherwise, like you seem to have -so would you mind providing me with a source?

Their ability to role out new projects or broaden the spectrum, will be directly related to their financial capacity to do so. If people are keen to see this happen then it might be beneficial to channel energy to assisting them to do this.

 

[SOC]

Their ability to role out new projects or broaden the spectrum, will be directly related to their financial capacity to do so. If people are keen to see this happen then it might be beneficial to channel energy to assisting them to do this.

Thank you, insearchof, for injecting some common sense into criticism of WPI for focusing primarily on XMRV. I, too, would like WPI to be doing in-depth investigation in a variety of areas. Based on their mission statement, I imagine they would like to be doing it, too. But they have a very limited budget. There's only so much they can do at one time. They chose to focus primarily (not entirely) on XMRV probably because it seemed most promising to them at the time. Perhaps it was the preferred research area of their primary funders. Research goes where the funding is.

I second insearchof's statement:

If people are keen to see this happen then it might be beneficial to channel energy to assisting them to do this.

 

[anncavan]

Hi all,
I haven't made it through all 50 comments. So you may have moved on from this. But I did want to mention what my experience was with this author. I was quoted in this article. Talked to him at length. Thought I'd share what I learned from the conversation.

The author was first in Reno with Judy, interviewing her, for a couple of days. I never thought to ask if he also interviewed Peterson, Levy, et al. I only knew this was an article about Mikovits. He was delayed, along with Judy, on the trip to Santa Rosa. If you remember there were weather issues causing a flight delay. He confirmed with me and others if people left the event early knowing she was going to be delayed. As everyone who was there could confirm, NO, no one left early. We were willing to wait. He arrived about the time Dr. Mikovits arrived.

My quote was from a telephone interview we did (he called from the UK... upon his return), lasting about 25 minutes. He saw a blog I had written about the Santa Rosa event, and contacted me after the fact. I quizzed him a bit at first, to be sure I wasn't part of a piece I was uncomfortable with. When I realized all of the work he had done, and that it was to understand WPI/Mikovits/XMRV and not to undermine it... I went ahead with it.

This was a piece that took a lot of time, effort, travel and $$. Frankly, there are very few publications out there anymore that will invest in real journalism (i.e. sending journalists onsite to interview people in their element). This was anything but frankenstein'd.

I'm not here to argue different people's opinions on XMRV, Dr. Mikovits, Dr. Peterson. I just thought I'd share the little experience I had with Ewen Callaway. Hope this sheds a little light on the construct of the article.

 

[insearchof]

That is just a preposterous thing for Judy Mikovits to say, is she really that cynical? So if a
Iresearcher looking at all the negative studies distrusts her science, they doubt the legitimacy of CFS? I can understand she may feel personally attacked by the changing opinions in the scientific community, but this is not about Judy, it is about XMRV and whether standard PCR tests calibrated to the same VP62 strain she used can validate her finding. She might be doing everything right and still be wrong, something could be going on here she just has no way to know about. This is why we need a broad range of skilled researchers and labs to explore XMRV.

This comment and the underlying belief that researchers are biased that she regularly shares reflects very poorly on WPI in my opinion. I think Mikovits has listened to anger of the the patients and then misdirected that at retroviral researchers, most of whom are not the medical professionals the CFS community has an issue with. These retroviral researchers Mikovits says disbelieve in CFS would like nothing more than to find a new retroviral disease to study.

Hi Kurt,

Should Judy have made the comments attributed to her, it may have been no more than a simple un emotive statement of fact and that fact is: many scientists doubt the illness has any underlying serious physical manifestation.....and why wouldn't they when all they have known about the illness has arisen out of the requirement to use the CDC CFS psycho based definition for research purposes. Scientists are not required to study the medical history of ME.(sadly)...and this is how it has been for the last 25 yrs.

The way I read that is that scientists do not distrust the science because its "her" science, but science in the counter camp / counter paradigm and that given their polarisation for so long, they are and would have been suspicious of a development of this nature anyhow...which is understandable given what I have outlined. I think your attack on Mitkovits from that *allegation, (because that is all it is ) is unfair, but understandable given the way it has been written.

 

[insearchof]

Hi all,
I haven't made it through all 50 comments. So you may have moved on from this. But I did want to mention what my experience was with this author. I was quoted in this article. Talked to him at length. Thought I'd share what I learned from the conversation.

The author was first in Reno with Judy, interviewing her, for a couple of days. I never thought to ask if he also interviewed Peterson, Levy, et al. I only knew this was an article about Mikovits. He was delayed, along with Judy, on the trip to Santa Rosa. If you remember there were weather issues causing a flight delay. He confirmed with me and others if people left the event early knowing she was going to be delayed. As everyone who was there could confirm, NO, no one left early. We were willing to wait. He arrived about the time Dr. Mikovits arrived.

My quote was from a telephone interview we did (he called from the UK... upon his return), lasting about 25 minutes. He saw a blog I had written about the Santa Rosa event, and contacted me after the fact. I quizzed him a bit at first, to be sure I wasn't part of a piece I was uncomfortable with. When I realized all of the work he had done, and that it was to understand WPI/Mikovits/XMRV and not to undermine it... I went ahead with it.

This was a piece that took a lot of time, effort, travel and $$. Frankly, there are very few publications out there anymore that will invest in real journalism (i.e. sending journalists onsite to interview people in their element). This was anything but frankenstein'd.

I'm not here to argue different people's opinions on XMRV, Dr. Mikovits, Dr. Peterson. I just thought I'd share the little experience I had with Ewen Callaway. Hope this sheds a little light on the construct of the article.

Hi Anncavan

That is interesting background. If a publication went to such trouble and expense to produce an article that had so many errors in it (see D Dodges remarks in comments at their site for a nice summary, and the most basic of which could have been corrected with a google search ie "chronic fatigue" -v- chronic fatigue syndrome, ) the time and money would have been far better spent with this journalist doing better research IMHO.

 

[meadowlark]

My quote was from a telephone interview we did (he called from the UK... upon his return), lasting about 25 minutes. He saw a blog I had written about the Santa Rosa event, and contacted me after the fact. I quizzed him a bit at first, to be sure I wasn't part of a piece I was uncomfortable with. When I realized all of the work he had done, and that it was to understand WPI/Mikovits/XMRV and not to undermine it... I went ahead with it.

This was a piece that took a lot of time, effort, travel and $$. Frankly, there are very few publications out there anymore that will invest in real journalism (i.e. sending journalists onsite to interview people in their element). This was anything but frankenstein'd.

That is great information, Anncavan. Thank you.

Insearchof, we are whistling the same tune.

If a publication went to such trouble and expense to produce an article that had so many errors in it ... the time and money would have been far better spent with this journalist doing better research, IMHO

... but I believe the mag's time and money should also have extended to a factchecker. I sound like a broken record on this, but I spent decades in that job, usually doing potentially libellous pieces. The greatest writers in the world make errors, and I corrected thousands of them. But checking is expensive, and due to the recession in publishing, it has been eliminated almost everywhere. (It's never been practiced in Britain.) That said, there have always been magazines that delude themselves with the idea that they hire only the best and most intelligent writers who would never, ever make an error, so they don't need checkers. They believe this in particular about business and science writers. But to me, there's no point in spending lavishly on a writer's time and travel if you aren't going to go the distance and check him ... and because I'm now too sick to factcheck, I'm not just kvetching about my lack of a job.

I thought of checking when I read this piece, because, beyond facts (and some of those are wrong), checkers look for bias, selectivity, and sweeping statements that need backup.

From the article:

"She says that their distrust of her science stems from doubts about the legitimacy of chronic fatigue syndrome itself."

Kurt, I understand your outrage at this statement, but IMO your quarrel should be with the writer, not JM. We're asked to trust the writer's interpretation of a quote that we haven't been given. Without the exact words, there's no way of telling if his brief summation is fair or not. As it stands, it's fast, flat and damning. In the spirit of "show, don't tell," he needs to print what JM said, and in what context. IMO the editor should have stepped in asked for a quote, because the writer is sweeping along here with a very broad brush. .... so broad that my off-and-on trust in him when I read that sentence was destroyed.

I found the piece extremely odd. Perhaps the writer meant to honour JM. If so, he failed. He makes JM and the patients seems like a mutual admiration society -- unfortunately, one that is rigid and in denial as their world comes tumbling down.

I now solemnly swear I will not bore this forum with querulous factchecking issues again. It's just that the barrage of infuriating misinformation the ME/CFS community has to read in the press damages us personally, damages science, and damages our cause.

 

[insearchof]

hi meadowlark

Yes it does appear we are whistling the same tune, only that you seem to know it far better than I

My suggestion that $ would have been better spent on "research" was indeed a reference to fact checking and the matters you mentioned.

I can only speak for myself, but I found your insights and experience most useful and interesting - far from boring and I cannot emphasize enough - how much I agree with your closing remarks - which to my mind need to be tackled head on.

 

[Esther12]

I think that that prostate cancer is seen as a more real illness, and that's one of the reasons why XMRV/CFS got more flack. Remember McClure was initially pro-XMRV/PC. I don't think it's all a big deliberate conspiracy, but researcher's expectations cannot help but affect their research.

We'll have to wait and see, but things don't look that promising for XMRV at the mo.

anncavan: Thanks for the info.

edited to un garble a sentance.

 

[insearchof]

HI Esther

With the greatest respect, a wait and see approach towards tackling factually incorrect, misleading and offensive pieces on the science of XMRV, CFS and persons with the illness- directly translates into "things not looking promising for XMRV.

If we want to stop misleading characterizations not only about XMRV but about the nature of this illness - we have to bite back in a way that they understand that they will need to be more careful in the future. This requires going beyond leaving comments on their websites. What we need to do is lodge intelligent submissions detailing breaches of journalistic /media codes with the relevant authority. I have done research into this/what's required in the UK and Australia, as well as some other countries.

I have seen several articles in recent times that have breached these codes with seemingly reckless abandon. Meadowlarks recent posts has provided insight into why this is taking place.....but it won't be remedied any time soon, unless appropriate pressure is applied.

I would propose giving judicious consideration to when this course of action is employed as not all complaints will be clear cut, and we really only want to go after those articles that are most damning (especially given health constraints).

Anyhow this is a project well within my skill set and current interest level. I have some good information to share with anyone who is interested. I would also like to hear from anyone here who we be keen to work with me on this global project.

 

[Cort]

I'm glad Lipkin and Montoya are collaborating on looking for pathogens. According to a NY Times article, Lipkin is the best in this area. His method according to the article is to take all the DNA from a cohort of patients and compare that to controls. He then pulls out the DNA that is common to all the patients, but not found in controls and sees if this is the DNA of a pathogen (existing or new). The article claimed this sorting out of the DNA and then deciding what it was only took less than a week. Obviously it will take longer from start to finish, but this encourages me.

I hope his 'debunking' of Borna virus in ME was real science. It would of course worry me deeply if it were not.

I imagine that Lipkin has made his considerable reputation in his field by engaging in rigorous as well as innovative research. I think we can trust him to do a thorough job in this very hot button topic. Basically I think we're OK with him!

 

[Cort]

from the Nature article:

This strikes me as profoundly uncool too. That sounds just crazy to me. Of course there is more to the story that we don't know.

Jay Levy submitted grant proposals to NIH in the early years and was denied like everyone else. His reputation as far as i know is that he is a brilliant retrovirologist. He discovered HIV on his own at the same time as the others discovered it with huge staffs.

I don't like the wording that his study is a "response" to the Lombardi study. This seems to imply it was a negative study, to me.

Whatever the outcome, I am glad that Drs. Peterson and Levy are on it. They are so smart and knowledgable and we know that Peterson would never do fake science.

I looked up Levy. He did do a couple of studies on CFS - but nothing on pathogens - so it looks like he had trouble getting grants on those and we know he did work on them. Note that the viral paper was a review.

Immunologic abnormalities associated with chronic fatigue syndrome.
Barker E, Fujimura SF, Fadem MB, Landay AL, Levy JA.
Clin Infect Dis. 1994 Jan;18 Suppl 1:S136-41.
PMID: 8148441 [PubMed - indexed for MEDLINE]
Related citations

2.
Viral studies of chronic fatigue syndrome.
Levy JA.
Clin Infect Dis. 1994 Jan;18 Suppl 1:S117-20. Review.
PMID: 8148437 [PubMed - indexed for MEDLINE]
Related citations


4.
Chronic fatigue syndrome: clinical condition associated with immune activation.
Landay AL, Jessop C, Lennette ET, Levy JA.
Lancet. 1991 Sep 21;338(8769):707-12.

 

[Cort]

I fully agree with this, in terms of the original stated mission of WPI that Peterson signed on to. I liked their original statements about using systems biology to find the solution, that was a nod to the complexity of CFS.

But they changed their mind and also their mission, and I'm sure being kept out of that decision loop took all of Peterson's power away. Why would anyone stay when you are demoted like that?

In defense of WPI (and you won't hear me defending them often...), the single focus on XMRV may have been partly due to the need to dedicate enough resources to thoroughly explore the issue, so not just a mission choice, also a bow to financial reality. WPI became a retrovirus research institute, focusing on Mikovits' expertise in cancer viruses. Now with their new CFS treatment center, I expect they will have to broaden out again and look at the entire spectrum of this illness, along with all the non-XMRV research.

FWIW, I think the idea that CFS can be explained by a single virus is following the AIDS/HIV model, but the recent proteomic study suggests a Parkinson's/Alzheimer's model may be valid as well. We need labs exploring all angles of CFS. WPI will have to broaden their scope now to stay in the game.

As I said I would have devoted the majority of my resources to XMRV as well. I think the problem is how publically tied the WPI has become to XMRV and how they've (Dr. Mikovits) have talked about it. The negative comments about researchers ability to willingness to find the virus can only have hurt them terribly in the research community. Dr. Mikovits somehow did it again in this latest interview calling the Tower or Hue paper 'Christmas garbage' - thereby immediately making enemies of those researchers AND their friends and supporters. She can't seem to resist making these digs when talking to reporters - and they, of course, love them!

If XMRV doesn't work out they'll have to transition to their other programs - which were great. If it doesn't work out I think they have to be very careful in the transition period because they have to maintain as much credibility as they can. For me the key figures at this stage are Dr. Ruscetti and Dr. Silverman. As long as they are in the game it makes sense for the WPI to remain in the game. If they say its over, particularly if Ruscetti does - then the WPI has to wind everything up gracefully.

They're damaged goods in the research community at this point - there is no doubt about that. There is a great deal of resentment about charges that researchers didn't want to find the virus or didn't know how to or that there was a political campaign to stop it. Actually the Nature article finally put Dr. Mikovits stance in a good context;that researcher community views this disorder as a psychosomatic disorder and don't want to put money into it but that did not apply to the retrovirology community with XMRV. They've come out in spades after the Science paper.

(I would argue that researchers morely likely see CFS as an unpenetrable mess - and don't want to dig into it. There's plenty of research into 'psychosomatic' and pscyhological disorders - billions of dollars a year are spent researching them - they don't have trouble funding them; something else is going on. (The NIH spent 2.7 billion dollars on mental health last year.))