The real story about XMRV coming out today?

[Bob]

Although I do understand the frustration people feel surrounding XMRV, I genuinely don't understand why some people feel so negatively about the WPI.

The WPI appear to me to be trying to find the cause and a treatment for ME. And I genuinely don't understand how they can be accused of doing anything other than what they believe is best for the ME community, in terms of research.

If there is one thing that I think the WPI could have been more careful with, then maybe it would have been wiser not to make such bold statements early on, thus raising patients' hopes.

But personally, I don't think that makes them bad people.

And I understand that some people don't like the way Judy presents herself personally. But again, I don't think that makes her a bad person. That's just her character. She's a passionate person and maybe that sometimes leads to words spoken hastily.

I'm sure that many scientists have imperfect characters. (And maybe a few of us do as well? I know I'm far from perfect!)

In fact, scientists are stereotypically renowned for their lack of interpersonal skills.

I don't believe that the WPI have set out to twist and manipulate data and facts, and pervert the history of our illness, like other well known scientists have.

So I don't understand the resentment or irritation that I sense from some people.

I genuinely don't understand, so if anyone would like to share their thoughts about this, either publicly or by PM, i'd be interested in hearing.

 

[Bob]

Well, for whatever reason it's happening, it's certainly making us look like a group that I, as a researcher, wouldn't want to try and help.

Well people obviously have their reasons for being frustrated, and I just wanted to get some insight into it.

I'm so full of gratitude towards the WPI that I genuinely don't understand some of the negativity that has been expressed towards the WPI over the past few days, although i do understand the frustration with the XMRV research.

 

[heapsreal]

Although I do understand the frustration people feel surrounding XMRV, I genuinely don't understand why some people feel so negatively about the WPI.

The WPI appear to me to be trying to find the cause and a treatment for ME. And I genuinely don't understand how they can be accused of doing anything other than what they believe is best for the ME community, in terms of research.

If there is one thing that I think the WPI could have been more careful with, then maybe it would have been wiser not to make such bold statements early on, thus raising patients' hopes.

But personally, I don't think that makes them bad people.

And I understand that some people don't like the way Judy presents herself personally. But again, I don't think that makes her a bad person. That's just her character. She's a passionate person and maybe that sometimes leads to words spoken hastily.

I'm sure that many scientists have imperfect characters. (And maybe a few of us do as well? I know I'm far from perfect!)

In fact, scientists are stereotypically renowned for their lack of interpersonal skills.

I don't believe that the WPI have set out to twist and manipulate data and facts, and pervert the history of our illness, like other well known scientists have.

So I don't understand the resentment or irritation that I sense from some people.

I genuinely don't understand, so if anyone would like to share their thoughts about this, either publicly or by PM, i'd be interested in hearing.

I agree, atleast they have stood up to the plate to bat for us and even if they dont find the cause they have created interest in finding out what cfs is about. Plus they can only learn from making mistakes, cfs research is still pretty new with only really a half dozen years of causes investigated seriously since the outbreaks in the mid 1980s. The money that has been put into immune infectious causes of cfs since the mid 1980s probably wouldnt pay the cleaning bill for 3 months at an MS clinic(thats my little zinger).

cheers!!!

 

[Firestormm]

Although I do understand the frustration people feel surrounding XMRV, I genuinely don't understand why some people feel so negatively about the WPI.

The WPI appear to me to be trying to find the cause and a treatment for ME. And I genuinely don't understand how they can be accused of doing anything other than what they believe is best for the ME community, in terms of research.

If there is one thing that I think the WPI could have been more careful with, then maybe it would have been wiser not to make such bold statements early on, thus raising patients' hopes.

But personally, I don't think that makes them bad people.

And I understand that some people don't like the way Judy presents herself personally. But again, I don't think that makes her a bad person. That's just her character. She's a passionate person and maybe that sometimes leads to words spoken hastily.

I'm sure that many scientists have imperfect characters. (And maybe a few of us do as well? I know I'm far from perfect!)

In fact, scientists are stereotypically renowned for their lack of interpersonal skills.

I don't believe that the WPI have set out to twist and manipulate data and facts, and pervert the history of our illness, like other well known scientists have.

So I don't understand the resentment or irritation that I sense from some people.

I genuinely don't understand, so if anyone would like to share their thoughts about this, either publicly or by PM, i'd be interested in hearing.

Morning Bob,

I wonder if there isn't two things (as well) at work here. On the one hand you have the WPI and on the other Dr Mikovits. For some other scientists perhaps, the two are distinct but for some patients and supporters the two are the same thing?

Lombardi is WPI too and yet he doesn't appear to have the same public presence - almost as if Mikovits has taken on the spokesperson role and thereby receives the most critique.

So what is the WPI? They have recently opened their clinic and they also fundraise. But is all the research done through Lombardi and Mikovits? I have asked before now for more information from them as to what it is they do exactly as an institution but I have yet to see anything concrete above what one hears in interviews and can read from their website.

 

[currer]

I dislike seeing people rushing to judgement here.

"Good science is difficult and takes time." (Who said that?)

It reflects very badly on people here that they are quick to judge those who are trying to help them.

However I suppose these threads are just gossip really.

We can know very little about what is really going on, even the best informed of us, and we need to remember this.

For my part, I see no reason from the research to give up on HGRVs.

There has been massive negative publicity as usual so I suppose that has affected some people.

 

[leela]

I agree, currer.

Much of the discussion on this subject (on various threads) has been based on speculation, gossip, and character assassination.

I have found myself wondering why there is so much collective energy spent arguing about what ifs and could bes
when no one knows the facts yet.

My personal preference is to wait to hear from a direct source what the truth is.

In the meantime argument based on speculation and gossip etc only divides the community further and potentially alienates the very orgs that are trying to help.

Even when you disagree with a person, or an organization, or can find fault with them, that doesn't necessarily mean they can't, won't or don't want to help solve this thing. I prefer to focus on what is working, what is helpful, and on the new infusion of energy and attention that has been brought to ME.

 

[VillageLife]

I heard Frank and Sandra Ruscetti are working on HGRV in MECFS....
Do u guys really think they would go along with this if it wasn't true!!
They are highly skilled and highly respected.

U guys need to understand this is first generation testing - of course people are gonna mess up!
Like Ruscetti said if this was HIV it's 1983!

Chill out because WPI have found retroviruses. It's 1983 keep telling your self that, because that's where we're at!

 

[joshualevy]

I believe it's pretty clear the images are the same.

The real question should be wether this is just sloppiness or fraud. I tend to go with the first option, and while I'm not a (retro)virologist I read in the comments of ERV's blog it's pretty easy to come up with a fraudulent image if Mikovits really wanted too. Still, a response of the WPI is highly warranted.

I disagree. A response from Dr Mikovits is highly warranted. She presented the slides at the conference and she was an author of the paper. A scientist is responsible for the data they present. WPI was her employer, but the response needs to come from her. If she was that sloppy (or anything else) with the slides, they are as much a victim of her sloppiness (or other) as the rest of us.

Joshua (not Jay!) Levy

 

[FancyMyBlood]

I disagree. A response from Dr Mikovits is highly warranted. She presented the slides at the conference and she was an author of the paper. A scientist is responsible for the data they present. WPI was her employer, but the response needs to come from her. If she was that sloppy (or anything else) with the slides, they are as much a victim of her sloppiness (or other) as the rest of us.

Joshua (not Jay!) Levy

You're right I guess, but at the time I wrote this she was still associated with the WPI (or at least it was not public knowledge they seperated their paths).

 

[Firestormm]

Retraction Watch: http://forums.phoenixrising.me/showthread.php?13992-RW-Sharing-Data-with-Science-Mikovits

Extracts:

'We spoke to Mikovits last week, apparently within a day of her being fired, according to the sequence of events reported today on the Wall Street Journal Health Blog. We were interested in her reaction to a comment to Retraction Watch by Science executive editor Monica Bradford about why the 2009 study Mikovits had co-authored had been partially retracted a rare move, as we noted:

'While we were aware that other co-authors had tested samples and claimed to not find evidence of plasmid contamination, those co-authors were unwilling to provide their data for examination so we were unable to comment on the validity of the other experiments.'

The contamination Bradford refers to had been reported to Science by two of the 2009 studys co-authors, both of whom are at the Cleveland Clinic. According to the notice:

'two of the coauthors, Silverman and Das Gupta, analyzed DNA samples from chronic fatigue syndrome (CFS) patients and healthy controls. A reexamination by Silverman and Das Gupta of the samples they used shows that some of the CFS peripheral blood mononuclear cell (PBMC) DNA preparations are contaminated with XMRV plasmid DNA (2).'

We spoke to Mikovits for a while, during which time she walked us through a presentation she gave on September 23 at a CFS meeting in Ottawa. Mikovits stressed that she believes a number of XMRV relatives are linked to CFS, and that the family needs a new name: HGRV, for human gammaretrovirus.

When we asked about the samples, Mikovits told us last week:

'The reason why we didnt give the actual data to Science and start a spitting match is that the point in science isnt to place blame. The point is to get to the bottom of whats going on.'

But in getting to the bottom of what was going on, Mikovits became convinced that, in fact, one lab was to blame:

'The only conclusion is that they were contaminated in the Cleveland Clinic.'

Unfortunately, three of the six samples from the Cleveland Clinic were the ones used to derive the whole sequence of the virus. But, says Mikovits:

'We decided not to throw them under the bus. We dont believe its in the interests of science. People make mistakes. They worked very hard to sequence the virus, and now we have to do the next generation.'

She continued:

'I told all the editors all this, and they agreed there was no reason to retract the whole paper.'

By not providing the data, however, Mikovits has left everyone wondering about her samples. And what led to her firing seems to have been a similar situation...'

 

[Ecoclimber]

Mikovits broke her agreement with mysell Jolicoeur and Miller on Patient Samples

Here is a little back story on this research.

Jolicoeur is a preeminent retrovirologist in Quebec who fervently wanted to find a cause and cure for the illness that afflicts the ME/CFS community. He was very selective in patient recruitment in his research making sure they met the Canadian Consensus Criteria. What was so unfortunate in all this is the fact that Mikovits so blatantly broke an agreement with myself and other retrovirologists and refused to provide Jolicoeur with information that could have advanced his research on whether retroviruses were a factor with ME/CFS patients. Mikovits's total lack of corroboration with other scientists who are seeking a cure for this dreaded disease is shocking and uncalled for. Her credibility among retrovirologists within the scientific community is practically nil. She made promise after promise to Jolicoeur which delayed his research and she kept none of them. It makes you wonder what is really going on at the WPI. Put another straw on the camels back.

I was hesitant about revealing this but certain information from other sites required me to post this information and I do have the emails.

 

[Ecoclimber]

Why would Mikovits do something like that?

Good question. Ask Mikovits or Jolicoeur. Well don't ask Jolicoeur as he doesn't know either. I suspect given the BWG results, that the WPI could not validate their XMRV positive patients as being positive which were needed for his project. The bottom line is that an agreement was broken. I told Cort many months ago to prepare the forum for negative news on XMRV. He can verify it. The WPI promised positive news and reports in August. Where are these reports?


We had and I am speaking of Miller and myself a great research project that would have selected patients under the highest standards possible far exceeding the CCC definition. We were looking for ME patients that exhibit certain symptoms associated with ME. I have to speak generally as some of this information is confidential. But we felt that we could find a cause and a possible cure for these ME patients. The research project was pulled because of the adverse and negative publicity we received. They had no idea what we were trying to do and still don't. The negative publicity was unwarranted both on myself, Miller and the Fred Hutchinson Cancer Institute.

These institutions are funded by both private and public community donations. The last thing they want is negative publicity directed at their institutions on controversial research projects.

The lack of impartiality affecting research by other retrovirologists is astounding. We are all part of some great government plot designed to undermine research into ME/CFS. Mikovits, herself, said the same thing. I am not part of any government conspiracy nor are any of the retrovirologists that I know. I find that insulting. And to debunk this heresy, retrovirologist want to find another retrovirus. It is not in their own interest to disprove or cover-up that their is a retrovirus out there. It's job security for them and a huge increase in their budget if they could discover a new retrovirus. So this dog don't hunt.

According to this other group, St. Mikovits can do no wrong and to my knowledge, there is not a scintilla of criticism directed at her or the WPI. If everyone wants to put all their eggs in one basket be my guess. If they want to put their trust in Dr. Kenny de Meirleir who is not a retrovirologist, or Hemispherx Biopharma good luck. I would check their background first though.

As a result, and this is a hint, the WPI can forget about ever applying for funding for ME/CFS research projects from many of the large philanthropic foundations of which I am a member or represent and they are extremely substantial and sizable. I old them they needed to fire Mikovits but this statement was not the cause of her dismissal.

I can tell you this though, that there are a number of research projects in the pipeline which I will not discuss here for fear of the negativity they will receive because they are not part of the WPI


When I promise a prominent researcher that he will be getting his sample and that does not happen, it tarnishes my image with him and it forced us to concede on methodology which we didn't agree. So some thing was weird that Mikovits would not allow us to draw blood from the positive patients she would provide.

Something was suspicious.


Peace,
Eco

Maybe they will get the irony that xmrv is dead or maybe not.
http://www.youtube.com/watch?v=e6Lq771TVm4

As Alan Dove posted on another blog
"You forgot the most Failblog-worthy observation in the whole paper: the WPI could not perform their much-ballyhooed cell culture assay on the blinded samples because ...

... wait for it ...

... their cell lines were contaminated with mycoplasma."

Posted by: Alan Dove | September 23, 2011 1:36 PM

The sequences that WPI posted to Genbank indicating variations are the same as xmrv and VP62 within a 2 or 3 base pair differences. There is no variation in sequence.

 

[Ecoclimber]

PS: the information that was posted in the the Chicago Tribune The report included an image purporting to depict lab test results from seven blood samples, including two from chronic fatigue syndrome patients whose blood appears to show evidence of XMRV and five from healthy people whose blood does not.

But the leader of the team that authored the 2009 paper, researcher Judy Mikovits, apparently presented the same figure -- carrying different labels and supporting a different point -- in a talk given at a conference on Sept. 23 in Ottawa.

A copy of her PowerPoint presentation circulating among an email group also reveals an apparent third version of the image, with a third set of labels, when formatting is turned off.

An unamed source has given me the original evidence and information that was sent to Science and reported by the Chicago Tribune. I have in my possession the original power point slides and other evidence consist of mislabeling multiple images. I have asked Cort on whether this information should be posted on this site.

Eco

 

[Wildcat]

.

Ecoclimber - WHAT 'email Group'? - we only have your word for it.

 

[Esther12]

I'm knackered after having spent about half an hour trying to catch up on what's been going on since I went to bed last night, and I'm not sure that I'm any better informed.

I'll just post up my own thoughts, for myself as much as anyone else:

To me, it looks like the Science paper was fundamentally flawed, it's been looking like that for some time. The BWG results were pretty overwhelming.

It now seems like a lot of sources are hinting at some kind of fraud.

I would be very surprised if anyone would try to fraudulently link CFS to an identified retrovirus. Just as I thought all of the negative studies were being done in good faith - faking something like this will get found out.

There are plenty of areas of CFS research where results can be manipulated, or presented in a misleading way, but the claims made in virology tend to be more objective and replicable, reducing the likelihood of this sort of thing. Having said that - I'm still open to the possibility that evidence of fraud will emerge. The whole thing is a total mess.

 

[Ecoclimber]

.

@Ecoclimber - WHAT 'email Group'? - we only have your word for it.

Yep, Basically your inference is that I am a liar which I take personal offense at.Don't believe it, then. I have enough history on here that I have always backed my claims. Cort can attest to that. I contacted Cort concerning posting the evidence on here. But I am getting to the point of walking away from this patient community and washing my hands from you guys. What will this mean will be the lack of researchers working in this field especially retrovirologist, a lack of funding, and pulling any existing research projects that are currently ongoing of which I am invoked. I a trying to save the community from being exploited but I can just as easily walk away and never look back again at this patient community. I sick and tired of people questioning my motives before I had chance to make due on my promises.

One Feed UP Sheep,

Eco

 

[Ecoclimber]

You guys there is an embargo on evidence by Science.That is what I am going to discuss with Cort. This information may not be able to be release legally at this moment. This is what must find out. This person fears for their life. This is why they gave me the evidence. I saw it. It is valid and there has been a manipulation of data as ERV pointed out. You can do the experiment yourself.

Eco

 

[Esther12]

Yep, Basically your inference is that I am a liar which I take personal offense at.Don't believe it, then. I have enough history on here that I have always backed my claims. Cort can attest to that. I contacted Cort concerning posting the evidence on here. But I am getting to the point of walking away from this patient community and washing my hands from you guys. What will this mean will be the lack of researchers working in this field especially retrovirologist, a lack of funding, and pulling any existing research projects that are currently ongoing of which I am invoked. I a trying to save the community from being exploited but I can just as easily walk away and never look back again at this patient community. I sick and tired of people questioning my motives before I had chance to make due on my promises.

One Feed UP Sheep,

Eco

Eco - but you say we've been too trusting of the claims of others (which I agree with).

You may be sure that you are right and others are wrong, but we've had other posters who are equally sure of themselves who strongly disagree with you.

When you post with claims of information that cannot be verified, then people are going to be sceptical. You shouldn't take this personally, because some scepticism is justified.

As you pointed out - Mikovits talked about positive news coming over the summer. I stayed sceptical, and waited to see if any news would actually come out.

You can't expect everyone to be more trusting of you than they are of others. We're all just anonymous user-names posting stuff on the internet.

 

[Wildcat]

.
Ecoclimber wrote: "But I am getting to the point of walking away from this patient community and washing my hands from you guys. What will this mean will be the lack of researchers working in this field especially retrovirologist, a lack of funding, and pulling any existing research projects that are currently ongoing of which I am invoked. I a trying to save the community from being exploited but I can just as easily walk away and never look back again at this patient community. I sick and tired of people questioning my motives before I had chance to make due on my promises."
.

Ecoclimber. You have now said that I have called you "a liar". No, I haven't said anything of the kind, and I don't appreciate you manipulating my questions in that way.

.
I have merely asked for evidence and validation of your statements. And I pointed out that there is no reason why we should accept your statements without such evidence.

.

Its difficult to see why you are so offended as to accuse me of 'accusing' you of being "a liar".

.

As the ME community are so often accused of believing supposed unvalidated material - can you not see why we should expect evidence from you to back up your statements?
.

 

[Wildcat]

.

Ecoclimber wrote: "But I am getting to the point of walking away from this patient community and washing my hands from you guys. What will this mean will be the lack of researchers working in this field especially retrovirologist, a lack of funding, and pulling any existing research projects that are currently ongoing of which I am invoked. .."
.
.
You strongly imply that you hold the power in your hands to influence the withdrawal of funding for ME retroviral research, and the power to influence whether or not researchers work on ME and retrovirology.
.

What a very extravagent claim, Ecoclimber!!!
.
.

Even MORE reason why you should produce valid evidence for your statements.