• 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, 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.

Dr. Lombardi is Research Director

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
What I can't understand is why Judy can't get her papers published anywhere at all.
What I mean is that there must surely be at least one journal that would publish?
I thought, for example, that PloSone would publish more or less anything because you have to pay them to publish.

I was wondering if it would be worth writing to someone like Amy Dockser Marcus about what's going on, so she can do an expose of the politics involved with the journals.
But that might cause more trouble for Judy, and might not be helpful.
And I don't know exactly what Judy isn't able to publish, so I don't have much to say if I write a letter.
Anyone got any thoughts about this?

I'm not convinced that is targeted at Judy. but more towards positive XMRV science. I'm almost positive Dr. Singh's autopsy study has been completed since November or December and no word yet? Judy made it known at the UCLA talk that she had "a drawer full of papers that I can't get published".

The fact that journalistic politics is stifling science that could be contributing to a treatment for PWC's really pisses me off royaly. The NIH should buy these studies and let researchers take the information and move forward with this science. The whole process is very wrong!
 

toddm1960

Senior Member
Messages
155
Location
Rochester, New York
I agree she's taking one for the team here, but my point is it won't matter. Judy is not the problem.........it's XMRV's connection to CFS. I don't think Lombardi will get any more papers published than Judy did, or will one more dollar of research funding find it's way to WPI.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
There's two sides to this announcement though.
There is a negative side where Judy can't get her papers published.
But there is a positive side, where her belief in the XMRV-CFS connection is very strong and she is moving forwards with patients trials anyway.
The statements on the blog, linked to earlier, state that Judy has had a lot of very positive interest from other players (possibly drugs companies?), and that drug research and patient trials, will hopefully go ahead with Judy at the helm.

It is appalling to see this political stuff going on, but I think that XMRV is not going to disappear just yet.
There's still a lot of positive work to be published and carried out by many strong players yet.

Well, I'm trying to be positive. It helps me.
 

5150

Senior Member
Messages
360
You know that quiet anger at your core? The kind that feels too deep and fundamental for yelling and ranting and raving, but more like an ember in your gut? That's how this makes me feel. Not that Judy is going to be doing "translational research," that's fine. What's not fine is that she is being embattled and shut out. Especially that she can't get research published. That isn't science, it's politics. Especially when we look at some of the shoddy psuedo-science that HAS gotten published.

Do you have a sense of deja vu? We've been here before, folks.

When the Cleaveland Clinic found XMRV in prostate cancer patients, that was okay. Other researchers looked into it, some yea, some nay, as the scientific community tried to see where it would lead.

But Judy Mikovits & the WPI find XMRV in ME/CFS patients and it brings an avalanche down on their heads. Sure, some real researchers try to go ahead with normal scientific process, but that's almost lost in the rush to discredit Judy Mikovits. Now she can't get published, she can't get funded, she can't mentor students. It sends a pretty strong message to any young researchers who might think of doing this kind of research: if you find even a potential biological cause of ME/CFS, we will bury you. Don't go there, it's professional suicide.

They keep telling us we need to be patient and let science reach the truth. That's what I want, too. XMRV may or may not be the cause of ME/CFS. But how will we ever know, if the science is buried? If impartial scientists aren't allowed to see and judge the data, because it's never published? If the studies don't happen because they don't get funded, or because scientists think it will derail their career if they do it? It makes me angry to see the scientific process subverted this way.

Doubt I could have written eloquently and succinctly as you did, but I really like what you said and enthusiastically agree. Main point to me is how horribly wrong it is for politics to take priority over science at the expense of human lives. My God, how wrong it is.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
There's two sides to this announcement though.
There is a negative side where Judy can't get her papers published.
But there is a positive side, where her belief in the XMRV-CFS connection is very strong and she is moving forwards with patients trials anyway.
The statements on the blog, linked to earlier, state that Judy has had a lot of very positive interest from other players (possibly drugs companies?), and that drug research and patient trials, will hopefully go ahead with Judy at the helm.

It is appalling to see this political stuff going on, but I think that XMRV is not going to disappear just yet.
There's still a lot of positive work to be published and carried out by many strong players yet.

Well, I'm trying to be positive. It helps me.

You're right, of course. It's not as if Judy Mikovits is rolling over and giving up, either. Most of the time I try to keep focussed on the positive, too; just sometimes all the politics getting in the way of good, clean science makes me so darned mad.
 

omerbasket

Senior Member
Messages
510
I guess that if the WPI and drug companies would perform clinical trials and show improvement in XMRV positive patients with drugs that helps against XMRV, than it would be easier to publish because of the power of the drug companies, and it would make the XMRV theory more accepted - because of the trial results.
 

toddm1960

Senior Member
Messages
155
Location
Rochester, New York
I don't think this can be just about CFS. If XMRV is accepted as a pathogen of any kind, associated with any disease, it opens a whole can of worms about lab contamination, contamination of pharmaceutical products and the connection to human disease.
Some virologists, business and politicians could well find a common cause here.
XMRV is not the only potential pathogen, as we well know, from some of the research papers that have been posted on these forums. What has been done about these papers concerns? Nothing.

Really? Might want to tell that to Elaine Defreitas.
 

Cort

Phoenix Rising Founder
I'm sorry this is not good news, this is not about Judy. It's about CFS. This is the 1991 playbook, publish and avalanche of negative studies, kill the funding and the retrovirus goes away. Lets watch how much mud is now piled on Dr. Lombardi, and see if funding starts poring in for XMRV/CFS research.......don't hold your breath.

I disagree. THis is not 1991 at all in my opinion. Back in 1991 you had only one federal agency involved. Now you have NIAID, NCI, FDA and CDC heavily involved. Plus you have the Blood WORking group and many imminent researchers including Lipkin, Ruscetti, Lo, Singh, Silverman (Cleveland CLinic).....The degree of work done on XMRV is light years ahead of 1991. THis time they are really trying to figure it out and hopefully they will and we won't be left hanging..

We'll see how Dr. Lombardi does. The WPI is not included in the funding but that, I think, is another story.,
 

Cort

Phoenix Rising Founder
The Whittemore Peterson Institute announced today that Dr. Judy Mikovits will transition from research director to director of translational research. Dr. Vincent Lombardi, lead author of the Science paper that found the retrovirus XMRV in patients with ME/CFS, assumes the job of director of research.

"The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors," Mikovits wrote to CFS Central in an email. "Therefore, I cannot mentor young investigators [and] students, who cannot move their careers forward because of these politics. I will be out seeking collaborations with other institutions--academic, private foundations and industry. Whenever we show and discuss all of the details of the data with investigators, they see and know it is not contamination.

"Prior to the reorganization," Mikovits continued, "I spent my days unable to help thousands... who have evidence of infection and cannot get help from their government or other research organizations.... I am totally confident that XMRV and a family of human gamma retroviruses is playing a role in ME/CFS.... [and] our reorganization reflects that confidence and allows me to move forward drug and diagnostic development."

This is smart move by the WPI but overdue. I think they were big trouble when Dr. Mikovits statement about XMRV being bigger than HIV in Africa hit the media quite a while ago. As a graduate student I was taught that the one thing you never want to do is overstate - and to always err on the side of caution.

She just ended up being not a good fit for that position. Successful Research Institutes do things in a certain way...they are objective, they are cautious, they re polite.....they do the things they need to do to be successful as a Research Institute. Something has gone wrong..The WPI hasn't been able to get grants at a time when they should have been pouring in - and when other Institutes were getting them and studies are continuing to pour out.

I think its purely a business decision....it wasn't working with Judy - so now they're going to try someone else. I'm sure it was a tough decision to make but it had to be done for the sake of the Institute and the ME/CFS Community. I'm sure Dr. Lombardi will do fine -he seems to fit the mold better...he has a lot of work to do to repair some bridges.
 

toddm1960

Senior Member
Messages
155
Location
Rochester, New York
Cort are you saying Dr Lombardi starts from square one? None of judy's work happened, and he has to redo the research? Do you think they'll publish Judy's work now because Dr. Lombardi is the head of research? Maybe I follow Hillary Johnson too closely, but I just don't see the government rolling over and giving up on 30 years of cover up.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
This is smart move by the WPI but overdue. I think they were big trouble when Dr. Mikovits statement about XMRV being bigger than HIV in Africa hit the media quite a while ago. I thought they were in big trouble at that point. As a graduate student I was taught that the one thing you never want to do is overstate - and to always err on the side of caution.

She just ended up being not a good fit for that position. Successful Research Institutes do things in a certain way...they are objective, they are cautious, they re polite.....they do the things they need to do to be successful as a Research Institute. Something has gone wrong..The WPI hasn't been able to get grants at a time when they should have been pouring in - and when other Institutes were getting them and studies are continuing to pour out.

I think its purely a business decision....it wasn't working with Judy - so now we're going to try someone else. I'm sure it was a tough decision to make but it had to be done for the sake of the Institute and the ME/CFS Community.

What a load of bollocks.
 
Messages
39
It was a decision made with the intent of getting us treatments as soon as possible. The basic research has been done. Now they want to help us get better.

It has nothing to do with it being a business decision. Unless you account for the WPI's business is to find treatments for us. In which case I agree. Judy can do more for us now working outside the lab in finding collaberators and working with Pharma to help us get well.

It's a tactic to speed things up not a sign of any kind of failure. On the contrary it's a sign of confidence and one showing how much success has been made in the lab.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is smart move by the WPI but overdue. I think they were big trouble when Dr. Mikovits statement about XMRV being bigger than HIV in Africa hit the media quite a while ago. I thought they were in big trouble at that point. As a graduate student I was taught that the one thing you never want to do is overstate - and to always err on the side of caution.

She just ended up being not a good fit for that position. Successful Research Institutes do things in a certain way...they are objective, they are cautious, they re polite.....they do the things they need to do to be successful as a Research Institute. Something has gone wrong..The WPI hasn't been able to get grants at a time when they should have been pouring in - and when other Institutes were getting them and studies are continuing to pour out.

I think its purely a business decision....it wasn't working with Judy - so now we're going to try someone else. I'm sure it was a tough decision to make but it had to be done for the sake of the Institute and the ME/CFS Community. I'm sure Dr. Lombardi will do fine -he seems to fit the mold better...he has a lot of work to do to repair some bridges.

I'm not exactly sure why Judy can't get her papers published, but do you believe that it might be solely due to Judy's character rather than the political situation Cort?

Judy might not have always followed all the social or professional etiquette 'expected' of her by her peers.
But if she had always followed the expected etiquette, and had never upset any other researchers along the way, do you think that we would be in a significantly better situation to where we are now with regards to XMRV research?
If Judy had easily been silenced and had not fought her corner, then, personally, i don't think that we would be in a better place now. And I don't think that there would have been so much scrutiny placed on all of the negative XMRV research, or so much publicity given to the positive XMRV research. So I think that Judy's done us a huge favour by not following the expected professional etiquette.

This is all just 'opinion' though, and I don't think it's worth our community getting distracted with conversations about whether Judy should have been a perfectly meek scientist or not.

Maybe someone with a lower profile might be able to get papers on XMRV published more easily, so I hope that Dr Lombardi has more success.
 

Cort

Phoenix Rising Founder
From XMRV Buzz

Big Changes at WPI - Dr. Lombard is taking over Dr. Mikovits position as Research Director and Dr. Mikovits is taking a new position as “Director of Translational Resources”

Dr. Mikovits – The WPI’s brief announcement stated Dr Mikovits will now be focused on treatment rather than research; her new duties are to engage “in activities which support and promote the development of more effective treatments for all patients with neuro‐immune diseases”

Dr. Mikovits has a long history in treatment research. She directed the Lab of Antiviral Drug Mechanisms (LADM) at the NCI which developed creens for treatments for AIDS and AIDS-associated malignancies (Kaposi’s sarcoma) and served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she developed cell and array-based methylation assays for drug discovery and diagnostic development. She has co-authored more than 40 papers over her career.

Dr. Lombardi – Dr. Lombardi is about as firmly embedded in ME/CFS research as a young researcher could be. As an undergraduate Dr. Lombardi was a research assistant for Dr. Peterson and did his graduate studies under none other than Dr. Suhadolnik of RNase L fame. He received his PhD in Biochemistry from the Univ of Nevada, Reno in in 2006. He cofounded RedLabs and then left to join the WPI. He has co-authored 3 papers over the past year on XMRV. He was the lead author of the Science paper.

The reason according to an email to Mindy Kitei at CFS Central is the WPI’s lack of success as a Research Institute; in particular their inability to get basic research grants funded or getting their papers papers. Dr. Mikovits said this was due to ‘baseless contamination rumors’ and ‘politics’.

“The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors,” Mikovits wrote to CFS Central in an email.

Dr. Mikovits remained confident that XMRV plays a role in ME/CFS.

“I am totally confident that XMRV and a family of human gamma retroviruses is playing a role in ME/CFS…. [and] our reorganization reflects that confidence and allows me to move forward drug and diagnostic development.”

Dr. Mikovits was, at times, unflatteringly protrayed several prominent media articles recently.
 

Cort

Phoenix Rising Founder
It was a decision made with the intent of getting us treatments as soon as possible. The basic research has been done. Now they want to help us get better.

It has nothing to do with it being a business decision. Unless you account for the WPI's business is to find treatments for us. In which case I agree. Judy can do more for us now working outside the lab in finding collaberators and working with Pharma to help us get well.

It's a tactic to speed things up not a sign of any kind of failure. On the contrary it's a sign of confidence and one showing how much success has been made in the lab.

I didn't make or think that up...I got that from Dr. Mikovits...She left because they couldnt get grants or their papers published...

Dr. Mikovits - The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors
 

Cort

Phoenix Rising Founder
f Judy had easily been silenced and had not fought her corner, then, personally, i don't think that we would be in a better place now. And I don't think that there would have been so much scrutiny placed on all of the XMRV research, or so much publicity given to XMRV. So I think that Judy's done us a huge favour by not following the expected professional etiquette.

I think she let it get personal and that hurt them and us badly. THey were a new lab with a controversial finding about a controversial disease; they had a big target on their back - if they had kept their head down and been humble - all the while working furiously behind the scenes to prove their finding - that would have helped alot - and I think they would have gotten help. Instead Dr. Mikovits started telling researchers they didn't know how to do PCR or didn't want to find XMRV... I jut think that was a big mistake in 'strategy' :) I'm very conservative in that area.

Annette certainly kept her head down and so did Dr. Lombardi and the Vice President....

Maybe someone with a lower profile might be able to get papers on XMRV published more easily, so I hope that Dr Lombardi has more success.

He will be less exciting and less of a cheerleader but I think that's what the research community is looking for in that position...
 

Cort

Phoenix Rising Founder
I don't think my opinions should really be a surprise. I've been rather open about this for a long time and I do feel quite strongly about it. Again, it was Dr. Mikovits who said she was changing positions because the Research Director position had not worked out.

Dr. Mikovits - The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors

I really don't know how to deal with the Dr. Towers thing...I can't control what some body else says. I can tell you (and have told you :)) that I have never communicated in any way with Dr. Towers. The only researchers I have talked to at length have been Dusty Miller and Dr. Satterfield. I've never talked to anyone from the UK.

I think where I stand on XMRV is pretty clear too. If I had to bet I would not bet on it but I do recognize that the while most of the evidence is not good right now...that the negative evidence is mostly circumstantial and the real test will come with the BWG and Levy and SIngh and Lipkin and other studies that come out this summer. Those will tell the tale - and everything could turn around.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Cort you have always said you try to have a balanced approach when writing about ME CFS and XMRV, today you seem to have quite strong views about Dr Mikovits ? You make it sound like things weren't working with her, so she left ? I dont think its like that, I think its more like shes now working at the next level up?

Cort does seem to have strong views on this, but the WPI themselves have said that Judy's old position was not currently working for the WPI. And I think that the WPI have implied that Dr Lombardi might have more success with getting the basic research published.

"The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors," ...
"Therefore, I cannot mentor young investigators [and] students, who cannot move their careers forward because of these politics."

http://www.cfscentral.com/2011/03/more-on-dr-judy-mikovitss-new-role.html

So in some ways, unless I'm interpreting what they've said incorrectly, the WPI have themselves implied that this may partly be a personality issue, unless Dr Lombardi is not going to pursue any further XMRV research, and is only going to pursue other research.

Don't get me wrong though... I'm a huge Judy Mikovits fan...
I think that Judy has approached things in her own way and in her own style. Whether that was the best way or not is probably purely a matter of opinion, as we don't know how the XMRV research would have evolved without Judy, except that I'm sure no one would have found a connection between XMRV and CFS for many many years; possibly decades. So without her, there would not yet be a XMRV-CFS connection.

And I don't want to downplay the politics that is clearly at play here, which is clearly huge and deeply worrying.

But, yes, Judy is clearly moving forwards with her XMRV research and it looks like she is going to push for medical trials.
 

Andrew

Senior Member
Messages
2,517
Location
Los Angeles, USA
I think it's basic to research that people understand the rules of the game so their research doesn't get steamrolled for no reason. I feel that wise researchers know how to play the system. I must say, however, that if the NIH is denying money to Mikovits for not playing the game right, then they are being petty and unprofessional. They are denying important research just to get back at someone who ruffled their feathers.

Anyway, I think this is a smart move for Mikovits. I don't think pharmaceutical companies get their feelings hurt so easily, and Mikovits can focus on the translational aspects now.
 

Cort

Phoenix Rising Founder
Cort are you saying Dr Lombardi starts from square one? None of judy's work happened, and he has to redo the research? Do you think they'll publish Judy's work now because Dr. Lombardi is the head of research? Maybe I follow Hillary Johnson too closely, but I just don't see the government rolling over and giving up on 30 years of cover up.

Not all - the irony is that there's no problems with the research. They did good enough research to get into Science and Dr. Mikovits has a very strong research background - much stronger than Dr. Lombardi. Based on her experience and her connections I would much rather have DR. Mikovits leading the research section than Dr. Lombardi...

The research stands just fine.