Article: Who's In? and Who International XMRV Workshop

Comments

judderwocky said:
please be aware. from my communication with them they do not endorse this. they do not believe this will help them.

you are shooting them in the foot.

i will say it again. Their media department, after I spoke with them, does not endorse this. they do not feel this will help them.

you should wait for their press release. after mikovitz has traveled one is going to be published shortly. at least give it a few days to hear their official response... something could change by then either way. at this time i can only telll you what they told me...

if you still feel then like this is the best course of action, nobody can stop you, but i think at this time it is very unwise.

at least wait for the WPI press release... they have asked that much.
[QUOTE=Robyn] I just received word from WPI media office. There is no press release coming and has never had one scheduled regarding this. [/QUOTE]
 
Cort wrote,



Cort - do you have link? I would very much like to hear this. I heard him on TWiV (a month ago?) and he sounded very neutral and nowhere giddy.

Thanks,
Otis
I'm glad to hear you say that because I was afraid I missed something about him. This is what I reported on the XMRV Buzz page. It a short talk and CFS is at the end but he just sounds upbeat.

Here's the link: http://soundmedicine.iu.edu/segment/2514/XMRV--A-Virus-That-May-Cause-Prostate-Cancer

Dr. Goff Talks - Dr. Goff talks with Dr. Kathy Miller on Sound Medicine in an audio clip. He emphasized that researchers have been working on XMRV's close relatives (the murine retroviruses) since the seventies so there a wide body of knowledge on this general type of retroviruses. The most pathogenic aspect of these retroviruses is their ability to insert themselves in places in the DNA that end up turning on genes that cause cancer. (That has not been found yet in XMRV).

Getting to CFS at the end of the clip he called the association with CFS 'very exciting' and said it was a tentative correlation but then stated he still felt it was 'very exciting'. (Two 'very exciting's in two sentences.....) He then made a very strong statement about the possible link between XMRV and ME/CFS saying "this is the kind of disease that a retrovirus like this might cause". (Contrast that with Dr. Reeves, Dr. Wessely, Dr. White and Dr. Lloyd statements that ME/CFS is NOT the type of disease that a retrovirus would cause) and then followed up with 'we could easily imagine it could be the cause of the symptomology of this chronic fatigue syndrome". Then he kicked the door wide open stating "I think in the grand scheme of things there's the potential that alot of diseases that we don't understand will ultimately be attributed to viral infections. This would be one of the most exciting and clear cases if it comes to pass". Whew!

Did I miss something in his earlier statements or does he sound alot more positive about XMRV than before? It's always easy to read too much into these short interviews but one has to ask oneself if something has gotten our rather cautious retroviral expert a bit more excited on the future of XMRV and CFS. Dr. Goff is a professor at Columbia University.... there is an XMRV study going on there...(?)​
 
Mikovats not only person who knows the science - that's why it's et al

Cort,

Thanks for having the courage and integrity to lay this out as you see it. I agree that the WPI and Dr. Mikovits deserve the lion's share of the credit and that it is a shame and a loss for the CFS community that she isn't going to be presenting. Ironically, the scientific community is extremely conservative (read - slow to change, even in the face of substantial evidence). Old paradigms have to be overturned no matter how half-baked (and the CDC's history with CFS is at best, half baked). Stepping out of line and engaging in advocacy will always get you a very strong slap on the wrist. And yes, it is always a lot like high school.

As for the conference, I suspect that Dr. Ruscetti is well aware of the Mr. Switzer's talk and something tells me that he is more than prepared to address the 'absence of evidence' claim with his own 'evidence of methodological differences' that account for the CDC's inability to detect XMRV. Mr. Switzer would do well to be very careful about what he claims he's incapable of finding. Unfounded assumptions could leave the CDC looking more than a bit inept while revealing a strong confirmation bias.
Agreed. Dr. Ruscetti has been playing this game for a long time and he knows what to say. Here is what he has said previously:

Speaking at a meeting at Tulane University on June 18, 2010*, Dr. Frank Ruscetti, one of the authors of the Science paper, listed the following "reasons for the lack of detection of XMRV" in his presentation:
Greater sequence diversity than originally believed
In vivo reservoir(s) of viral replication not identified
World-wide distribution scattered like HTLV-I
Patient selection and methods applied vary widely
PCR/other contamination.

Dr. Mikovats isn't new to this game either, but she deliberately chose a path that she knew might result in this kind of censure. She's a grown-up - she made her choice. Patients have to live with it.

Quite frankly, getting mixed up in the autism movement hasn't helped her case. Two, count em, two patients with autism (which is a spectrum) who may have tested positive for a retrovirus (unpublished data) that has yet to be proven pathogenic in any disease is hardly earth shattering science news. (yes, autism is terrible, but joining forces with another group of people who are stigmatized gives people yet another reason to infer that all patients are nuts.)

As for unpublished data, the peer review system exists for a reason. Like most governments it is not a perfect system and it can be used for both good and self-serving interests.

In order to break the rules, you have to understand them in all their nuances and then have the power to get away with it. Dr. Mikovats just doesn't have that kind of power. Neither do patients. If they did, this forum might not exist at least in its current purpose and patients with this severe neuroimmune disease would be getting appropriate medical treatment, possibly even a cure.

There are good scientists speaking - not everyone is a dupe.
 
Wow, really charming behaviour. That's right, all we need is a bigger fish. We can ditch the people who got us here. The WPI, who are they again. I seem to remember than making some big discovery, but who cares right? And they went where the science took them, autism. We don't have time for that bunch, right? Disgraceful. How could they. Jeez So, is it about rules or power, you don't seem to know? So when Ruscetti is unable to speak, who does it then? What happens in the future? If they remove the WPI now, who is pushing the science forward? We have no Alter paper yet, and Ruscetti works for the Government. They can shut this down in an instant, and you will never stand a chance.

Here's a scenario. Governement says the prevalence rate is much lower than first thought, only need one lab to test samples. Guess what, it's only a couple of CFS patients that have it. The WPI test never worked. When that happens you will be moaning that they didn't do enough.
 
Well said V99! Yes, Thanks WPI for waking up the world to the possibility that ME/CFS might actually be caused by a retrovirus and forcing people to consider that we might not be crazy. Now move aside WPI......we can take it from here. I promise you that no one will ever investigate the possible connection between XMRV, Autism, GWI and other neuroimmune disease.
 
I am shocked at your statement below. There is a famous quote by Margaret Mead, I am sure you have heard it.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has"


In order to break the rules, you have to understand them in all their nuances and then have the power to get away with it. Dr. Mikovats just doesn't have that kind of power. Neither do patients. If they did, this forum might not exist at least in its current purpose and patients with this severe neuroimmune disease would be getting appropriate medical treatment, possibly even a cure.
 
Quite frankly, getting mixed up in the autism movement hasn't helped her case. Two, count em, two patients with autism (which is a spectrum) who may have tested positive for a retrovirus (unpublished data) that has yet to be proven pathogenic in any disease is hardly earth shattering science news. (yes, autism is terrible, but joining forces with another group of people who are stigmatized gives people yet another reason to infer that all patients are nuts.)

As for unpublished data, the peer review system exists for a reason. Like most governments it is not a perfect system and it can be used for both good and self-serving interests.
I agree it is not tactically smart from a CFS perspective to have got involved in the autism debate but I think things have got overstated here. I don't see that she has 'joined forces' with them. Might it not be genuinely difficult for any scientist to be in posession of such information and not say anything? When I watched the CFSAC presentation in October last year it was stated by Dr Peterson that 6/15 autistic patients had tested positive for XMRV by PCR and 4/7 patients by antibody tests, so I don't know where the figure of two came from? Who knows if they have tested more people since then? I think she made a mistake talking about it in the Nevada news interview but believe she has admitted this was an error on her part.

As far as speaking about unpublished data at conferences, we are really judging her by a double standard here, as it is quite clear that this is normal practice in science. I have heard Myra McClure reveal results of her as yet unpublished XMRV/prostate study on Australian radio, reports of Huber talk of her unpublishable results at a conference, the widely reported Japanese blood study was reported at a conference, and unpublished results of XMRV/prostate cancers were reported at the CROI conference in February etc. Aside from that in your very own post you have quoted Dr Ruscetti doing exactly that. I thought that it had been agreed on this forum not to repeat what was seen on the 'videos' precisely to avoid him being accused of publicly speaking on unpublished issues?

In any case I am OK that JM is not speaking at the conference, so long as Ruscetti is there. She will be there in any case, on the scientific committee, and somehow I think she will make herself heard!
 
I agree it is not tactically smart from a CFS perspective to have got involved in the autism debate but I think things have got overstated here!
Regardless of XMRV or any illness similarity, the CFS and autism communities share a serious mistrust of the CDC and Anthony Fauci. That in itself is a major bond. But I do agree that revealing a potential link in a news conference was not a very good tactical move. Working behind the scenes on this would be a much better thing to do until there is proof of XMRV being a causal factor in illness.
 
In the Osler's Web entry devoted to Alter, Hillary Johnson writes, ""This the worst public health crisis in our history and the government has no right to stop [this paper's] publication," Mikovits said recently.'"

If Judy Mikovits really believes that this is the worst public health crisis in our history, she has been relatively restrained.

I don't think she would have evolved or articulated this view if it weren't shared by the Ruscettis. I suspect she knows alot more than she is saying. And what she knows is pretty dire.
 
In the Osler's Web entry devoted to Alter, Hillary Johnson writes, ""This the worst public health crisis in our history and the government has no right to stop [this paper's] publication," Mikovits said recently.'"

If Judy Mikovits really believes that this is the worst public health crisis in our history, she has been relatively restrained.

I don't think she would have evolved or articulated this view if it weren't shared by the Ruscettis. I suspect she knows alot more than she is saying. And what she knows is pretty dire.
Nice point Akrasia. Personally I don't think that her saying those things helps - I'd much rather have Annette saying those things, but I think you have a good point. She describes Dr. Ruscetti as her mentor and my impression is that she bounces everything off of him. She actually had him fly to Reno to meet the Whittemore's and CFS patients to get his thoughts on whether she should join up. He was reportedly very intrigued with CFS and gave her an emphatic Yes! I kind of think of him, with his all his publications and his reputation, as our kind of touchstone...if he's still in there - that's a great sign.

The fact that he's giving the presentation on CFS that he's fine about being front and center with this, in itself is encouraging. If he was worried he could be backing off - hanging around in the background to see how this all plays out - but there he is giving the lecture on CFS, of all things.
 
By the time this Conference takes place, Annette Whittemore will have opened the Whittemore Peterson Institute; the WPI will have published more data supporting the Lombardi et al Science paper; Dr. Mikovits and Drs. Ruscetti will have explained to the CDC how to find XMRV and its variants; the CDC in turn will have reported that they can find XMRV; Dr. Harvey Alter and Dr. Lo's paper for the NIH/FDA will have been published confirming the work of the WPI; the Blood Working Group will announce that it is appropriate to test the nation's blood supply; VIPdx will have announced the availability of a clinically validated serology and antibody test; the public will be aware of the serious physical nature of the disease formerly known as CFS; other XMRV associations with other diseases will have been disclosed; and, most appropriately, credit will have been given to the Whittemore Peterson Project (which miraculously will have finally explained in terms even Reeves can understand) the difference between looking for a laboratory sequenced clone and a real virus in the blood of really sick people. Who wants to speak after all this happens? Everybody.:D
 
It's OK for Alter to leak info on his unpublished work, but Dr. Mikovits can't? Sounds a little sexist to me.
 
It's OK for Alter to leak info on his unpublished work, but Dr. Mikovits can't? Sounds a little sexist to me.
Alter "leaked" his presentation? If so, he managed to leak every other presentation made at the 2010 17th IPFA/PEI conference: http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/Web%20Body?OpenFrameSet&Frame=Body&Src=%2Fipfa%2FUpcoming_Events.nsf%2Fv-HomePage%2F%24first%21OpenDocument%26AutoFramed

Click on the link for Events 2010 under the heading Past IPFA events:

The conference organizer published his presentation and Ortho found it and announced it to the world. Alter's information had already been peer reviewed and accepted for publication. It's apples to oranges.
 
I've thought it was quite possible that Alter leaked his own presentation, but I'm certainly glad that every other IPFA presentation got leaked at the same time. I'm sure it would not be helpful to Dr. Alter or to the patient community if it could be proved he was the leaker. Certainly he would have been justified in taking that action, if indeed his research was embargoed by DHHS when it was already in press. We will never know (and that's fortunate!) but I prefer to think of him as a heroic scientist outflanking the CDC, rather than as the victim of Ortho.