• 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.

Daily Beast: Interview with Mikovits who tells her side of events...

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Interview with Mikovits: 23 July 2012: The Daily Beast: http://www.thedailybeast.com/articl...tigue-syndrome-turned-into-an-ugly-fight.html


How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight

How did a star researcher into the medical mystery of chronic fatigue syndrome end up in jail and unemployed? For the first time, Judy Mikovits tells her story.

On Nov. 9, 2011, Judy Mikovits, a well-known chronic fatigue syndrome researcher at the center of one of the strangest scientific dramas in recent memory, found herself devising the following plan. She would have to escape by boat.

There was a man in a car in front of her house in Oxnard, Calif., waiting to serve her with a temporary restraining order demanding the return of stolen property to the Whittemore Peterson Institute in Reno, Nev., from which she recently had been fired.

She took the small boat moored behind her house down into the harbor, where she got onto a friend’s sailboat and hid there for five days.

By Nov. 14, Mikovits was back at her Ventura County house, having retained a lawyer who assured her that there was no warrant out for her arrest, Mikovits told me last month in her first interview since her legal trouble began. Yet within one week of that phone call, her doorbell rang.

Her husband, David Nolde, answered it, and a female voice spoke from the threshold.“She said, ‘Is Dr. Judy in? It’s Jaime, I’m a patient, she knows me, she said I could come by any time,’ ” Mikovits recalled. “And I said, ‘It’s okay, David, I’ll take it.’

“I went down to the front door. And she said, ‘Remember me?’ And I said ‘No.’ And then everybody jumped out of the bushes. She showed her little badge. The police cars went and surrounded the house.”

Mikovits’ arrest, for possession of stolen property—her own research notebooks from the lab where she worked—was an unlikely outcome for the 54-year-old. Having spent 20 years at the National Cancer Institute, Mikovits is a seasoned research scientist, an expert on viruses.

In 2006 she accepted the position of research director at the brand new Whittemore Peterson Institute, a private lab that had been co-founded by Annette and Harvey Whittemore, one of the most politically connected couples in Nevada.

The sometimes-debilitating disease she went to study, chronic fatigue syndrome (CFS), has long baffled scientists, and sufferers were desperate for information. The Whittemores themselves had founded the institute because their daughter, Andrea, now in her thirties, has struggled with CFS for years.

What happened there sounds like fiction: a scientific breakthrough, suspicion of contamination, a well-meaning scientist, a nonprofit institute, a fee-for-service diagnostic lab, and a legal battle that is still unfolding. In the process, Mikovits plunged from a leading light in the fight against a mysterious medical condition to an unemployed woman with a mark on her name in the world of science.

For rest of article see: Interview with Mikovits: 23 July 2012: The Daily Beast:http://www.thedailybeast.com/articl...tigue-syndrome-turned-into-an-ugly-fight.html




[Spacing my own]
 

Enid

Senior Member
Messages
3,309
Location
UK
Good to hear the Dr Mikovits side now - thanks Firestormm. So glad to hear she is still there with all her considerable knowledge.
 

Sam Carter

Guest
Messages
435
...
Meanwhile, other research groups around the country were trying to replicate the 2009 results, but in the two years that followed, almost all had failed. The word “contamination” began to surface more and more frequently.

In the summer of 2011, Macavity and her young lab assistant, Max Pfost, began poring through their notebooks, trying to find where such a contaminant might have entered their process.

In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same ice chest with the rest of the lab’s blood samples. Macavity says she was out of town the day this occurred.

...

Thanks Fire. I think I can see a narrative developing.
 

Sam Carter

Guest
Messages
435
Lol I'm not familiar with Macavity, Sam. Care to enlighten me?

Macavity is a cat from a TS Eliot poem whose defining characteristic is that (following some wrongdoing) he is "never there".

(For the literal minded, I'm not suggesting Dr. Mikovits is a criminal cat; or a criminal (of any kind); or a cat.)
 

Nielk

Senior Member
Messages
6,970
Thank you Firestorm.

It's very interesting to hear her story in "her own words". This story is still full of mysteries.


In the summer of 2011, Mikovits and her young lab assistant, Max Pfost, began poring through their notebooks, trying to find where such a contaminant might have entered their process.

In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same ice chest with the rest of the lab’s blood samples. Mikovits says she was out of town the day this occurred.


There was an entry about that? Who put that entry there? No one paid attention to it before? If Mikowitz was out of town when this occured, who put that entry in?

They returned to her condo and started packing. The next day when she woke up, she says, Pfost was gone and the birthday bag was empty by her front door. She says she assumed that Pfost had taken them—to photo copy or to be safe—so she finished packing her things, loaded the cardboard boxes into her car, and left for California.

and..

According to Mikovits, it was while she was in jail that her husband received a call from Pfost, who told him that the notebooks were in California, with Mikovits. Sitting in her jail cell, Mikovits thought of two unpacked boxes stuffed into her closet. She told her husband to look there. He did, found the notebooks, and turned them over to the police. Mikovits was released from prison.

Who packed these two mysterious boxes - which happened to be the only ones left..unpacked in Mikovits' house? How did the notebooks get in there?

I have no idea what really transpired there but, the more I hear/read about these events...the more questions I have. I don't trust anyone anymore in this whole sordid story. I feel like everyone involved has something to hide and we as a "patient community" are the vicitms.
 

Esther12

Senior Member
Messages
13,774
Sounds like a pretty well constructed story. It would have been nice to have something about the mislabelled slide too.
 

jace

Off the fence
Messages
856
Location
England
In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same ice chest with the rest of the lab’s blood samples. Mikovits says she was out of town the day this occurred.

The Lombardi study was submitted in April. This action would have been too late to affect the research for that, I would have thought. Could it be this was about the VIPdx Lab?
 

barbc56

Senior Member
Messages
3,657
WOW!!! I guess she's had some time to "culture" her story.

This is very sad news for those in our community who were counting on her.

Thanks Firestorm.

Barb C.:>)
 

CJB

Senior Member
Messages
877
The Lombardi study was submitted in April. This action would have been too late to affect the research for that, I would have thought. Could it be this was about the VIPdx Lab?
That's what I got from reading the story. Once she discovered the possibility of contamination, Dr Mikovits asked for the testing to be stopped immediately and it wasn't.
 

jspotila

Senior Member
Messages
1,099
That's what I got from reading the story. Once she discovered the possibility of contamination, Dr Mikovits asked for the testing to be stopped immediately and it wasn't.

I think there is another issue raised by the quote about discovering the source of contamination: if in July of 2011 Dr. Mikovits determined that there was contamination as of March 2009, why did she not immediately alert the editor of Science? Why did she continue to oppose retraction of the Lombardi paper? Given the Science May 2011 Letter of Concern (which Dr. Mikovits vehemently opposed), this seems like a highly relevant fact. Placing XMRV in a freezer of clinical samples- whether Dr. Mikovits was there the day it happened or not - seems like a significant lapse in procedure. She insisted for two years that it could not possibly be contamination, that other scientists didn't want to find XMRV, and then discovers how easily her own lab could have been contaminated. My personal opinion is that the Whittemores were not the only people who should have been informed of this, and I hope this info was shared with others including Dr. Silverman and Dr. Lipkin.
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Unfortunately, the writer of this article created confusion. Perhaps this might be one of her first writings on ME/CFS.

I have heard that the article will be appearing in Newsweek as well. If that is true, I hope the article will be properly reviewed and edited for facts and clarity prior to that publication.
 

RRM

Messages
94
The Lombardi paper was first submitted to Science in May of 2009. Because it was reviewed by June 4th, it couldn't be late May, however. That still makes it unlikely that she's referring to testing that was done for the paper.

However, like Jennie Spotila mentioned, this really is essential information. It goes to show that XMRV clones were in their lab (myths to the contrary were actively spread and maintained by several people on various forums) and shows that there were some serious quality control problems in their lab around that time.
 

Ecoclimber

Senior Member
Messages
1,011
Since the civil case still needs to be adjudicated, why is Mikovits speaking out now? Some interesting questions still need to be answered as compared to past statements. Was her attorney present during the interview? Did the final draft of the article required her attorney's approval? Perhaps as an explanation for some of the confusing elements in this article?

Casey Schwartz is a staff writer at Newsweek and The Daily Beast. She is currently at work on her first book, a personal look at the culture of modern psychiatry. She has a Masters Degree in psychodynamic neuroscience from University College London. Wessely's stomping ground? Why did they pick this writer, this magazine, at this time?

Eco
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
The Lombardi study was submitted in April. This action would have been too late to affect the research for that, I would have thought.

I agree with that it would have been most likely too late for the research that was submitted to Science. I suspect that if there was a post in the lab notebook about storing XMRV in with other samples in any lab, Judy M would have freaked out. The Whittemore's most likely had no clue about its potential implications for further research and VIPDx's future revenue streams. The split between stopping everything or moving forward with VIPDx set the stage for what transpired since then.

The finding of "contamination" has impacted the entire industry to the point where substantial sums of money are being spent right now on getting to the bottom of this. The MIT Consortium on Adventitious Agent Contamination in Biomanufacturing is an example of this.

I haven't heard of Silverman's work being retracted on Prostate Cancer despite contamination being found.
Additionally, Denise O'Keefe has reported finding MLV's in Benign Prostatic Hyperplasia (BPH).

The hunt continues.
 

RRM

Messages
94
One other note: while Mikovits mentions that a March 2009 notebook entry indicated that XMRV cultures were placed in the same ice chest as patient samples, the article doesn't say that this actually happened in March of 2009. In other words, it's posibble that a March 2009 entry indicated that this misplacement had happened earlier, for instance if the March 2009 entry stated that the cultures were taken out of the chest that also contained patient samples.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
There is a LOT of time still required to prepare a scientific paper after the laboratory work is concluded. It can take weeks or months just to analyze the data, and that has to take place before the authors can hash out how they want to write it up, draft it, revise it, etc etc., which can take more months.

I think a timeline of Dr. Mikovits' public, on-the-record statements would be an interesting exercise.