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New Twists in the XMRV-WPI Story

(Originally posted on Oct. 5, 2011; updated periodically as documented below and reposted on Nov. 19, 2011.)

By K. Kimberly McCleary, President & CEO

A story that began developing in the blogosphere in the last days of September broke loose on Oct. 3, with a story in the Wall Street Journal that reported Judy Mikovits, Ph.D., director of research at the Whittemore Peterson Institute (WPI) and senior author of the study that first linked CFS to XMRV, had been let go. The news had first been announced the night before on the blog X Rx. The reason given was not waning support for the XMRV hypothesis, but rather a disagreement over sharing of laboratory materials related to a grant from the National Institutes of Health. See, “Scientist who led XMRV research team let go,” by Amy Dockser Marcus. The WPI posted this message on its Facebook page that afternoon.

Images posted on ERV showing overlap of 2 figures

RetractionWatch, a blog that monitors scientific journal retractions, posted notes from an interview with Dr. Mikovits conducted a few days earlier about the partial retraction of data from the Science paper on Sept. 22. The post also referenced the split with WPI. See, “Why didn’t XMRV-CFS researcher — now fired — share data with Science?” by Ivan Oransky.

Later that evening came a story in the Chicago Tribune that added another twist. An image used by Dr. Mikovits in a slide presentation given at the IACFS/ME research conference in Ottawa was alleged to be the same as one published in the 2009 Science paper that launched at least 20 studies attempting to validate the link between CFS and XMRV. The apparent overlap was identified first on a blog called ERV on Sept. 30, just a week after the Ottawa presentation. The labels on the image, and the experiments it was used to illustrate, were different in each case. Graduate student Abbie Smith contacted authorities with her comparison of the images. The Tribune article confirmed that editors at Science had launched an investigation to examine the potential misrepresentation of data in the paper. See, “Manipulation alleged in paper linking virus, chronic fatigue syndrome,” by Trine Tsouderos.

On Oct. 4, two journalists at Science who have followed the XMRV-CFS connection for the past two years, provided more details about the fast-moving story of the contested image. Dr. Mikovits’ collaborator at the National Cancer Institute, Francis Ruscetti, Ph.D., confirmed the two images were the same, and that some details of the original experiment were not “germane” and were therefore not reported in the 2009 Science paper or descriptions of the methods published subsequently. Additional perspectives of Dr. Mikovits’ dismissal were provided by Dr. Mikovits and Annette Whittemore, the WPI’s founder and chief executive. See, “CFS researcher fired amidst new controversy,” by Jon Cohen with Martin Enserink. The Scientist, a magazine of the life sciences that has covered XMRV after major study announcements, posted a short article. See, “Chronic fatigue researcher fired,” by Edyta Zielinska. Late that evening, Ms.Whittemore released this letter on the WPI’s Facebook page.

Dr. Mikovits outside the WPI, as shown in Nature News (photo credit: AP)

Nature, a top scientific journal, has regularly reported on developments in the XMRV story although it has not published any original studies on CFS. On Oct. 5, Nature News provided an update on the latest. The story delved into the ramifications of the omission of details from the 2009 Science paper and provided explanations for the labels of the full image that had been cropped for use in both the Science paper and the Ottawa presentation. The article indicates that Dr. Mikovits had already complied with a request from Science to provide editors with the original images. See, “Integrity issues follow fired researcher,” by Heidi Ledford.

The Oct. 7 issue of Science included news of Dr. Mikovits’ transition and its investigation in the “Newsmakers” column of the magazine. See, “CFS Researcher Fired” (available only to subscribers).

BioTechniques, the international journal of life science methods, has kept tabs on the XMRV story and published an update on Oct. 7. See, “Partial XMRV retraction, group study leader leaves.”  The Australian, a daily newspaper, covered the story on Oct. 8. See, “Fatigue syndrome takes its toll in the U.S.,” by Leigh Dayton. She quoted two Australian experts on CFS who stated that “the XMRV story illustrates why patients and doctors must remain sceptical of such claims until they’re replicated.” The British Medical Journal featured this article on its home page on Oct. 11, “Scientist who linked chronic fatigue syndrome to XMRV is sacked,” by Clare Dyer. The BMJ published one of the first negative studies of XMRV in Feb. 2010. 

On Nov. 4, 2011, the Whittemore Peterson Institute filed a lawsuit against Judy Mikovits in Washoe County Court (Nevada). Annette Whittemore made a public statement about this action in a Nov. 11 post to the WPI’s Wings of Hope blog titled, “Our Responsibility.” At issue is a collection of materials referred to in the legal documents as “misappropriated property” that has been missing from WPI since on or about the date of Dr. Mikovits’ separation from WPI. This legal dispute has been discussed on other CFS-related online forums and blogs, with some people close to both parties offering additional details. In her blog post titled, “A Bitter Divorce,” Hillary Johnson included text of a letter sent by Dr. Mikovits’ attorney Lois Hart in response to the temporary restraining order.  There has been no formal public reply made by Dr. Mikovits directly. Jon Cohen reported on this development for ScienceInsider on Nov. 14, 2011, “Lawsuit filed against CFS research by former employer.” Jeff Askt at The Scientist reported, “Chronic fatigue researcher sued,” on Nov. 15, 2011.

Late on Nov. 18, unconfirmed reports indicating that Dr. Mikovits had been arrested appeared on several websites. At 7:34 a.m. on Nov. 19, Reuters editor Ivan Oransky reported details of the arrest in a Retraction Watch post titled, “Chronic fatigue syndrome researcher Judy Mikovits arrested.” According to the public arrest record (booking number 1259336), Dr. Mikovits is being held without bail at the Todd Road Jail facility until a hearing on Nov. 22 at 1:30 p.m. in the Ventura County (California) Superior Court. Dr. Mikovits is charged with a felony, as a “fugitive from justice.” Dr. Mikovits is also scheduled to appear in Second Judicial Court of Washoe County (Nevada) at the same time and date for a hearing related to the legal action being pursued by the Whittemore Peterson Institute. There were additional entries made to the case record on Nov. 18, suggesting the occurrences are linked. Dr. Mikovits was expected to participate in a panel discussion at a patient conference sponsored by Dr. Derek Enlander on Nov. 20 at Mt. Sinai Medical Center in New York. Jon Cohen posted a story for ScienceInsider, “Controversial CFS researcher arrested and jailed,” on the evening of Nov. 19. His article includes statements from Dr. Mikovits’ attorney and Annette Whittemore. Dr. Steven Salzberg, who has written about XMRV for Forbes, posted to his blog on Nov. 21 about the latest events, “CFS researcher arrested.” Brendan Maher at Nature reported on the court case and the uncertain status of the RO1 award made in 2009 to WPI in a story for Nature News Blog, “Researcher arrested over missing lab notebooks” (Nov. 21, 2011).  

Trine Tsouderos, science writer at The Chicago Tribune, added new information about the arrest in a column posted late in the evening of Nov. 21, “Discredited chronic fatigue researcher in California jail.” She reports that the University of Nevada-Reno police issued the warrant for Dr. Mikovits’ arrest following a report of theft of property filed by the Whittemore Peterson Institute. The article quotes from Tsouderos’ earlier interviews with Dr. Mikovits for Tribune stories about XMRV and includes a timeline of events from 2006 up to the present. The story appeared in print in the Nov. 22 edition of the Chicago Tribune. Also on Nov. 21, additional details were added to the public record for the Washoe County case.

In response to media inquiries received on the morning of Nov. 22, I released this statement about the hearings scheduled for later that day:

“The high-profile split at the Whittemore Peterson Institute, the investigation by Science and ensuing legal actions are of deep concern to many in the patient and scientific communities. Because of the hope that XMRV raised for better care, Dr. Mikovits and the WPI have both attracted considerable support that is now being tested as details of civil and criminal charges are made public. We remain concerned for the well-being of all who are affected by this dispute and hope that the various investigations will yield an equitable resolution. The CFIDS Association maintains its focus on research to improve the diagnosis and treatment of CFS, and efforts to end the life-altering disability, stigma and isolation CFS imposes.”

In the early afternoon of Nov. 22, Tsouderos updated her article to reflect details revealed in sworn affidavits submitted to the Washoe County court on Nov. 21 by WPI employees Max Pfost, a post-doc who had been supervised by Dr. Mikovits, and Amanda McKenzie, a lab assistant. According to these statements, Dr. Mikovits compelled Pfost to steal 12-20 laboratory notebooks the day after her dismissal and to conceal them until Mikovits could return to Reno in mid-October. Mikovits asked McKenzie to take other lab materials and send them to National Cancer Institute researcher Frank Ruscetti, a collaborator on the original 2009 Science paper; McKenzie refused according to her sworn statement. The affidavits were posted to the Tribune website and, later in the day, to the WPI’s website.

Cohen of Science magazine attended the Nov. 22 court hearing in Ventura County, but was denied permission to provide extended coverage of the proceedings. Prior to the hearing he posted an update for ScienceInsider, “Details emerge of the criminal charges against embattled CFS researcher.”  According to public information posted to the court docket, Mikovits was released on $100,000 bail and has an extradition hearing pending Dec. 19, 2011. A report, “World-known researcher set to be released on bail,” in the Ventura County Star by Tom Kisken documented that the parties are negotiating over rights to the property at issue. Dr. Mikovits released a statement to supporters via her husband, David Nolde, asking them to tone down criticism of the WPI. At 10:49 p.m., Cohen posted this report to the ScienceInsider site, “Inmate Mikovits meets judge.” Brendan Maher updated coverage for NatureNews blog with Researcher confesses to stealing lab notebooks,” describing details in the affidavit by Pfost.

These other journalists and news outlets covered the story:

On Nov. 23, the Whittemore Peterson Institute posted a message titled “Happy Thanksgiving” on its Facebook page that reads, in part, “We are thankful that most of our property has been returned.” There were no details provided and questions posted below the message about the statement were not answered. The Associated Press reported on Nov. 28 that Dr. Mikovits’ husband indicates the parties are trying to reach an out-of-court settlement in “Dec. 19 extradition hearing for Nevada researcher.” Later that evening, the Reno Gazette-Journal reported that 18 notebooks had been returned to the WPI and were being checked for completeness. See, “Missing notebooks returned to Reno chronic disease lab,” by Frank X. Mullen, Jr.

The Dec. 2 issue of Science magazine featured this 2-page news story by Jon Cohen

On Nov. 29, News4 (television) in Reno reported that Dr. Mikovits had turned herself in to Reno/Washoe County authorities; she was released hours later on her own recognizance. The news report by Dina Kupfer included an exclusive interview with her attorney, Scott Freeman. Scott Sonner of the Associated Press reported the same afternoon that Dr. Mikovits returned the notebooks but maintains her innocence in the criminal case; see “Scientist surrenders in Reno research theft case.” Medscape, a leading site for physicians, also reported on the story on Nov. 29, although the report by Janis C. Kelly did not reflect the latest developments. Jon Cohen reported on Science Insider later that afternoon that, according to a statement issued by Annette Whittemore, the WPI’s losses were substantial and it was not dismissing the civil case against Dr. Mikovits. A two-page story, “Dispute over lab notebooks lands researcher in jail,” by Cohen ran in the Dec. 2 issue of Science, filling in additional details about the unfolding events and reaction to them. (Subscription or pay-per-view required.)

Additional coverage followed in these outlets:

Jon Cohen interviewed Scott Freeman, the defense attorney representing Judy Mikovits for a ScienceInsider article posted on Dec. 5, “Criminal attorney speaks for controversial CFS researcher.” He told Cohen, “‘She maintains her innocence and we anticipate defending her aggressively,’ says Freeman, who is based in Reno, Nevada. ‘Obviously, she’s not someone who is a criminal.’”

Dr. Mikovits was one of six people in the scientific community featured by Nature in its “2011 Yearbook,” published in the Dec. 2011 issue of Nature Medicine. DISCOVER magazine, The Scientist and Science News all referenced in the dissolution of XMRV’s association with CFS in their year-end wrap ups.

When the split occurred at the end of September, WPI stated its commitment to a full research program and Dr. Mikovits expressed her intention to continue her research at another institution. The National Institutes of Health remains committed to completion of the multi-lab study of XMRV and related viruses being coordinated by Ian Lipkin, M.D., at Columbia University. Ewen Callaway reported for Nature News Blog on Dec. 15, that Dr. Mikovits would participate in the Lipkin study from the labs at NCI. See “CFS researcher finds a temporary home.” The R01 award made to WPI by NIH is being reviewed according to a prescribed process. On Dec. 17, Lenita Powers at the Reno Gazette-Journal reported a lengthy story titled, “Whittemore Peterson Institute vows to get past setbacks.”

The civil case filed by WPI was heard in Washoe County Court (Nev.) on Dec. 19. According to Cohen’s report for ScienceInsider, “Civil court rules against CFS researcher,” WPI prevailed on all counts, which included breach of contract and misappropriation of trade secrets. Mikovits pleaded the Fifth Amendment in her defense, but the judge dismissed her written replies to the complaint. While some of the property was returned, notebooks that recorded details fo experiments conducted between 2006 and 2009 are still missing and a computer returned by Mikovits had its hard drive wiped clean. WPI will seek monetary damages for the losses it has incurred. An arraignment for the criminal case will be held in Reno Justice Court on Jan. 10, 2012.

The outcome of the civil case was reported here:

In its Dec. 23, 2011 issue, Science issued a full retraction of the 2009 paper by Lombardi et al. linking CFS to XMRV. The notice of editorial retraction states that the editors have “lost confidence in the Report and the validity of its conclusions.” Regarding the figure that came under scrutiny on Sept. 30, editor-in-chief Bruce Alberts writes,

“In response to concerns expressed about Fig. 2C, the authors acknowledged to Science that they omitted important information from the legend of this figure panel. Specifically, they failed to indicate that the CFS patient–derived peripheral blood mononuclear cells (PBMCs) shown in Fig. 2C had been treated with azacytidine as well as phytohemagglutinin and interleukin-2. This was in contrast to the CFS samples shown in Figs. 2A and 2B, which had not been treated with azacytidine.”

More details, reaction to and media coverage of the retraction can be found here: http://www.research1st.com/2011/12/22/retraction/. On Dec. 26, 2011, the authors of the Proceedings of the National Academy of Sciences paper that identified sequences from MLV-like viruses retracted their paper. Details here: http://www.research1st.com/2011/12/26/pnas-retraction/.

Dr. Mikovits was arraigned in Reno Justice Court on Jan. 10, 2012. According to this report by News4 Reno, the next court date in the criminal case will be March 15, 2012.

On Jan. 27, 2012, former business partners of Harvey Whittemore, Tom Seeno and Albert Seeno, Jr.,  filed a lawsuit in Clark County, Nevada, alleging that Mr. and Mrs. Whittemore had embezzled and misappropriated millions from the business, Wingfield Nevada Group Holding Company, over a period of several years. Named in the lawsuit specifically are payments from Wingfield for salaries, travel expenses and other expenses paid on behalf of the Whittemore Peterson Institute without the knowledge or consent of the other partners. A $100,000 donation from Nevada Energy to the WPI is identified as not having been disclosed to the business partners; Nevada Energy was a major participant in a large land development project undertaken by Wingfield. Several Nevada news outlets covered the news of the lawsuit and KRNV posted a link to the civil court filing. The Reno Gazette-Journal reported that the allegations had been provided to local law enforcement as well. It is reported that the Reno Police Department and the State Bar of Nevada are conducting investigations. The Whittemores have told the media that the allegations are false and that they will take “all steps necessary to preserve their reputation.” A post to the WPI’s Wings of Hope blog made on Jan. 27 made no mention of the various legal actions in which the family is involved.

On Feb. 1, the Whittemores filed a $180 million suit against the Seenos, alleging that the Seenos ”were guilty of racketeering, extortion and fraud, and saying they threatened him and his family with death if he didn’t follow their orders,” according to a Reno Gazette-Journal story by Martha Bellisle, “Lobbyist Harvey Whittemore strikes back at former business partners.”

On Feb. 9, 2012, the FBI launched an investigation into political campaign contributions made by Harvey Whittemore. WPI was one of some 30 locations in Nevada involved in the investigation. According to a statement in a Las Vegas Review-Journal article by Jeff Germain and Frances McCabe, “FBI investigates campaign spending by Whittemore,” Annette Whittemore confirmed that the WPI is cooperating with the investigation and that a WPI employee was interviewed by FBI agents on Feb. 9. On Feb. 10, Sen. Harry Reid and other elected officials stated that they were donating to charity contributions received from the Whittemores and their close associates.

While these controversies may remain news for the next while, regardless of the outcome there are many promising research studies under way that warrant continued support and merit hope for better ways to diagnose and treat CFS. The CFIDS Association is committed to translating the heightened attention and deeper engagement XMRV has attracted into sustainable progress to solve CFS.

We will continue to update this post with additional coverage and details, as warranted.

K. Kimberly McCleary has served as the Association’s chief staff executive since 1991. 

Updates:

    Oct. 6 at 9:20 a.m. to add link to article from The Scientist
    Oct. 6 at 6:11 p.m. to add info about brief article in Oct. 7 issue of Science.
    Oct. 7 at 6:24 p.m. to add link to the article from The Australian
    .
    Oct. 10 at 3:23 p.m. to add link to the article from BioTechniques.com
    Oct. 11 at 3:27 p.m. to add link to the BMJ article.
    Nov. 13 at 9:13 a.m. to add links to Washoe County case information and blog post by Annette Whittemore.
    Nov. 14 at 7:21 p.m. to add link to the
    ScienceInsider article.
    Nov. 19 at 9:02 a.m. to add links to The Scientist article and information about Dr. Mikovits’ arrest on Nov. 18 as reported on RetractionWatch.
    Nov. 19 at 1:19 p.m. to add links to the Osler’s Web blog post.
    Nov. 19 at 9:10 p.m. to add link to
    ScienceInsider article.
    Nov. 21 at 10:11 a.m. to add link to Genomics, Evolution and Pseudoscience blog post by Dr. Steven Salzberg.
    Nov. 21 at 5:24 p.m. to add link to Nature News Blog article.
    Nov. 21 at 11:40 p.m. to add link to Chicago Tribune article.
    Nov. 22 at 11:14 p.m. to add information from new affidavits and additional media coverage.
    Nov. 23 at 12:42 a.m. to add links to UPI, Ventura County StarScienceInsider and NatureNews articles.
    Nov. 23 at 3:15 p.m. to add link to The Scientist article.
    Nov. 23 at 11:51 p.m. to add information about the syndication of the Chicago Tribune article and the WPI Facebook page statement.
    Nov. 24 to add link to BMJ article.
    Nov. 25 at 11:17 a.m. to add link to Der Speigel article.
    Nov. 28 at 6:40 p.m. to add link to AP story
    Nov. 29 at 9:00 a.m. to add link to RGJ story.
    Nov. 29 at 6:58 p.m. to add links to the News4 and Medscape stories.
    Nov. 29 at 11:14 p.m. to add link to ScienceInsider story.
    Nov. 30 at 12:57 p.m. to add link to the AP story by Scott Sonner.
    Nov. 30 at 7:35 p.m. to add link to latest news stories.
    Dec. 1 at 4:12 p.m. to add link to Science article.
    Dec. 3 at 9:06 a.m. to add links to Slate article and ABC News post.
    Dec. 6 at 8:20 a.m. to add links to the ScienceInsider story.
    Dec. 7 at 2:01 p.m. to add link to The Nevada Sagebrush story.
    Dec. 13 at 10:49 a.m. to add link to Nature Medicine’s 2011 Yearbook.
    Dec. 15 at 7:32 p.m. to add link to Nature News Blog report.
    Dec. 19 at 5:30 p.m. to add link to the RGJ report.
    Dec. 23 at 8:30 a.m. to add information about the civil case
    Dec. 14 to add information about the editorial retraction by Science.
    Jan. 11 at 9:26 a.m. to add information about the PNAS retraction and arraignment hearing.

    Jan. 28 at 12:01 p.m. to add information about the lawsuit filed by Whittemore’s fomer business partners.
    Jan. 28 at 7:04 a.m. to add additional news stories
    Feb. 3 at 7:39 a.m. to add information about counter lawsuit.
    Feb. 4 at 2:24 p.m. to add additional news stories.
    Feb. 10 at 9:39 a.m. to add information about the FBI investigation.
    Feb. 12 at 7:51 p.m. to add additional news stories.

    Tags: , , , , , , ,

    49 Responses to “New Twists in the XMRV-WPI Story”

    1. kathy d.
      06. Oct, 2011 at 1:22 am #

      With all of this vilification of Judy Mikovits, I hope that her well-intentioned hard work will not go to waste, nor will she be totally discounted and thrown into the dustbin of science. Her work was important. Her intentions were good. She helped to bring CFIDS out of the closet and into the public domain.

      I hope that the criticisms of her does not throw CFIDS back under a rock and out of the scientific domain. I also hope that scientists, advocates, doctors and people with CFIDS not join on the bandwagon with this vociferous attack on her. Remember for one thing that she is a woman scientist, in a field that isn’t all too sensitive on that.

      It’s the science that has to be remembered and not personal attacks on Mikovits.

      In one disagreement with WPI, Mikovits had not agreed that a company it owns sell a test for gammaretroviruses. She had disagreed with them for a long time on that. When it comes to financial deals, I can see how a company can conflict with a scientist.

      Hopefuly, this can all be sorted out, and that it can be figured out what good scientific contributions have been made and what needs further study and work.

      I trust that Ian Lipkin will pursue the virology end of CFIDS doggedly, and that the Lights, Komaroff, Natelson and others will continue their research.

      I don’t think anyone will allow CFIDS to be forgotten, but this has happened before. Hopefully, the XMRV issue will be but one episode in the unfolding of the mysteries of this disease, and that it is just one blot in a huge and historic scientific investigation.

      And, hopefully, it will be put in perspective and no one will again allow CFIDS to be forgotten.

      • Linda Becker
        07. Oct, 2011 at 3:00 pm #

        Thank you, kathy d. for an excellent comment/letter. It is imperative that CFIDS remain at the top of medical research – wherever it is done. I have suffered with this since 1986 and have not worked since 1992 and I want answers, desperately so!
        I also agree with you pertaining to women in the scientific community.
        Linda B.

        • Doc
          25. Nov, 2011 at 1:05 pm #

          I, also, agree.

    2. kathy d.
      06. Oct, 2011 at 1:44 am #

      My concern is: Can’t all of this be worked out scientifically with studies and data reporting without burning anyone, especially women, at the stake? It isn’t objective. It isn’t science.

      And eliminating XMRV is not eliminating a viral cause of this disease. Some researchers are making that claim, which is not justified.

      • Kim McCleary
        06. Oct, 2011 at 9:38 am #

        Kathy, this situation is of great concern to many. As Linda Vansteenwinckel posted on our Facebook page, “This investigation is in everybody’s best interest. After the huge investments in the theory by patients and researchers worldwide, we need the very best answers.” We concur.

        In the meantime, these unsettling developments will not deter the work of other dedicated researchers who are pursuing promising leads. The research funded by the CFIDS Association has already attracted considerable new funding from NIH, Department of Defense and other sources. For every dollar we “invested” in the studies led by our 2009-2010 grantees, they have attracted $7 new dollars in return.

        And we agree, there is substantial evidence that infectious agents play a role in CFS — regardless of how the research on XMRV turns out. Dr. Anthony Komaroff and Harvard neurologist Dr. Tracey Cho recently published a review paper titled, “The Role of Infection and Neurologic Dysfunction in CFS,” in Seminars in Neurology. We can only provide access to the abstract (https://www.thieme-connect.de/ejournals/abstract/sin/doi/10.1055/s-0031-1287654), but it provides an important summary of the studies that support the involvement of several pathogens in CFS.

        CFS will not be driven into darkness, as some have suggested. It is a more robust field than ever before and new scientific tools and the influx of new ideas about how to study it make possible the opportunity for near-term advances that will translate into better care for patients.

        • Doc
          25. Nov, 2011 at 1:14 pm #

          The research of Dr. Judy Mikovits did much to bring ME/CFS into the light where it could draw so much hopeful funding. American law says “guilty until proven innocent”, so in my mind, whether she made unintentional mistakes (intentionally redundant to express no lapse in ethical judgement), no mistakes at all, or some wrongdoing that has not yet been proven in court, she should not be burned at the proverbial stake.

          I can only imagine the stress Dr. Mikovits is under, this very minute. Her career, her professional, social, and family relationships, her ability to survive financially rather than die homeless on the streets, are all at risk here, whether immediately or over the next few years. The lawsuit will take at least that long to complete, if not a decade or so longer.

          No good deed goes unpunished, and for that reason, I can personally relate. I was never arrested, but I was put through grueling trials of many kinds, under attack from many directions — enthusiastic to jump on the bandwagon and kick a woman doctor while she was down. It isn’t pretty. It’s a dramatically, glaringly ugly experience.

    3. Mark Hansen
      06. Oct, 2011 at 8:54 am #

      If the misrepresentation is found to be true, it will be a sad day indeed. All of this is starting to feel like a situation where a researcher allows passion to get in the way of good judgement. I do hope the Lipkin study puts this to rest and that the research community realizes the importance of understanding these disorders as completely as possible. I expect in the coming years that we shall find relationships between CFIDS or ME and Fibromyalgia, Lupus, Dercum’s disease and a host of others. If nothing else, this whole quest should cause the medical community to look in the mirror and humble itself…we have not begun to truly understand the inner workings of the human organism. Other civilizations have forgotten more than we here in the West have yet learned about the practice of medicine.

    4. kathy d.
      06. Oct, 2011 at 1:10 pm #

      All of what occurs around XMRV or any other possible viral connection to CFIDS should be objective and scientific, based on studies, evidence and findings, and not vilification and attacks. That’s what I’m saying, especially worrisome to me when it’s going on against a woman scientist, even if she has made mistakes. She did help to bring CFIDS out into public and media attention and helped to bring out the real suffering that those of us who have it live with.

      We do not know all of what is going on at WPI, what the differences of opinion are behind the scenes. We just don’t no matter what anyone’s public statements are. From what I’ve read, I think some of what Judy Mikovits is saying is understandable, and there will inevitably be conflicts between companies and researchers.

      This is why I think all scientific study should be done in collaboration and cooperation with researchers sharing information and working together, and financial gain should be taken out of the picture altogether. Our lives are at stake here and those of future CFIDS sufferers.

      I do await Ian Lipkin’s findings, am glad he is studying viruses’ connection to CFIDS. I’m glad Komaroff is also looking at infectious agents and is also studying brain changes in people with the diseases, and that others are studying other aspects. That’s all good.

      I hope that none of those studies are contaminated with the vociferousness involved in the XMRV studies, even if some leads turn out not to be true. The history of science and medicine has been one of trial and error, successes but also wrong paths.

      This is a very insidious disease. As the saying goes, it’ll take a village to figure it out and then how to treat it. I just hope for cooperation and sharing along the way.

      Sorry if I’m repeating. I’ve only had 1/2 hour of sleep, not of my own doing, but one aspect of this disease — and no relief in sight.

    5. Justin Reilly
      07. Oct, 2011 at 10:03 pm #

      It’s important to note that Dr. Mikovits does not contend any more than XMRV is associated with ME. Silverman’s mistake is responsible for this; this is not her fault. She thinks other, closely related Human Gamma Retroviruses are and said that she will publish sequences shortly.

      • JoeyH
        29. Nov, 2011 at 7:38 pm #

        Mikovits has done a lot more than that. She has posited a link between XMRV and autism, in the process perpetuating the myth of a vaccine-autism link (in her own words). She has badmouthed scientists who were unable to replicate her findings. Whatever happens, happens, but let’s not put Judy Mikovits or *any* researcher on a pedestal. She is not a blameless victim of conspiracies; she has made mistakes like most humans do. (Please note I’m not implying guilt or innocence in this latest kerfuffle; that’s for the courts to figure out.)

    6. Carolyn Richards
      08. Oct, 2011 at 8:47 am #

      There was a lot of credence put towards the BWG study. I for one would like to know how it was conducted as one gets little bits & pieces & doesn’t know what is truth or fiction. To even report on a paper with only 15 samples is not scientific. Secondly the CDC was one of those conducting tests & evidently they handled the samples prior to testing to spike some with contaminent (what kind of contaminent? Did all the testers get to handle the 15 specimins? How many conflict of interests do we have? Were Lombardi’s specimins contaminated with mycoplasma. If not done via the test how did they get contaminated? Were the famous 15 spiked with XMRV contaminate?

    7. Allison Carter
      19. Nov, 2011 at 8:30 pm #

      It is important to note that Dr. Judy is not in jail over her work or fraud associated with her work. It appears she removed notes and other documents from WPI that she felt belonged to her because she did the work. WPI as her employer believed the work belonged to them. Who it belongs to is for the court to sort out. WPI filed to get possession of the work and a temporary injunction was put in place until the court hearing on Nov. 22. That temporary injunction prohibited Dr. Judy from leaving the state. She left the state and she was arrested. She is being kept without bail because she left the state making her a flight risk. I just wanted to make sure that everyone understood that

      • John Clemens
        20. Nov, 2011 at 6:27 pm #

        Here’s the timeline of events as I’ve just read it:

        Sept 29, 2011…Dr. Judy, waiting for her car outside the WPI, receives a call from Annette Whittemore telling her she’s fired. She gets into her car and drives home to Ventura, Calif. She never goes back to her office. She is met when she arrives home by Lilly Meeham who has stated there were no lab notebooks or computer gear in the car. After Dr. Judy was fired, she was locked out of her office so she has not had access to it since.

        Nov. 4, 2011…the restraining order is issued. This is almost 5 weeks after she physically left the WPI.

        Two weeks later…Dr. Judy is arrested at her home in Ventura.

        I find this so at odds with your statement that Dr. Judy had left the state knowing there was an injunction against doing so…

        “That temporary injunction prohibited Dr. Judy from leaving the state. She left the state and she was arrested. She is being kept without bail because she left the state making her a flight risk. I just wanted to make sure that everyone understood that”

        …that I wonder if you could set me straight in this matter.

        John

        • Allison Carter
          23. Nov, 2011 at 9:03 pm #

          John Clemens: I think recent sworn statements by a WPI staff member tell the whole story

          • Doc
            25. Nov, 2011 at 1:32 pm #

            Please summarize “whole story” here, showing wish version is true.

    8. Firestormm
      20. Nov, 2011 at 5:03 am #

      Thanks for the thorough article and updates. I struggle to keep in the loop and having all the links in one place is a great help.
      It is – as Annette has effectively said – in the hands of the law and I dare say we will hear more in due course and following due process. Anything else is speculation but that doesn’t mean reasoned and fair discourse should be prohibited.

    9. kathy d.
      20. Nov, 2011 at 6:07 am #

      I am under the impression that Dr. Mikovits lives in Ventura, Calif. She was arrested in Ventura and is being jailed in the Ventura County Pre-Trial Detention Facility.

      Whatever happened, it is not in the interests of the CFS community to have Dr. Mikovits treated like this, followed and jailed like this. This is very unfair. This is very wealthy and powerful family persecuting a woman researcher, who does not have their resources, attorneys on retainer and colleagues in high places in Nevada.

      I had also read that her attorney’s home was searched. This appears to be a violation of attorney-client privilege, and I hope that her attorney contacts the ACLU or even the Bar Association to affirm her rights as a lawyer representing a client who has rights.

      This is so unfair to all of us who are suffering with this disease, the whole thing.

      Who benefits from all of this fighting and vilification? Not us.

      Also, Dr. Mikovits was prevented from attending and participating in Dr. Derek Enlander’s seminar on CFS at Mount Sinai on Nov. 21. Her contributions could have helped with information for the health professionals in attendance. Her absence does not help us at all. It could even be detrimental.

      She should not be treated like this, with the full weight of the government coming down on her. It’s not a good thing, and as I said, does not help those of us with CFIDS.

      And as a woman I am very sickened by this treatment of a woman scientist.

      If there are legal issues, let them be sorted out in a fair and impartial hearing where lawyers can be heard — if it’s possible for fairness to prevail in Nevada.

      It feels like a David and Goliath situation.

      And it also does not enhance WPI’s standing in the CFS community. It will hurt them, and if they intend to help advance our cause, then they should stop this viciousness. Just the jailing of Dr. Mikovits and the preventing of her from going to Mount Sinai for the seminar is aggravating many of us, who want as many minds as possible contributing and helping us.

      The CFS blogosphere is full of criticisms of WPI for this behavior. So they’re not helped by this.

      Dr. Mikovits also has to earn a living and she is virologist; that’s what she does. And no matter what, she should be able to do that and protect herself.

      • Doc
        25. Nov, 2011 at 1:40 pm #

        Can you just imagine what goes through the head of the next researcher WPI tries to hire? There may be a shortage of jobs, but better to bag groceries awhile, if it comes to that, than risk one’s career/credibility in the hands of an employer who jumps to charge, arrest, and publicly spetacal-ize a prior researcher over something which probably could have been handled much more quickly, effectively, and quietly, lawyer to lawyer, outside the courts. If WPI thought Dr. M had no right to data docs she seemed to have taken, they could have written, asking for their return, citing why they believed their stance, and following that up with some sort of negotiation/arbitration, if needed. Court should be the last effort of a failed attempt to otherwise resolve this. Arrest seems particularly extreme.

    10. Pol
      20. Nov, 2011 at 10:05 am #

      Who do you think you are trying to connect the false accusations against Dr Ruscetti and Dr Mikovits with the appalling actions of the Whittemore’s! The western blot issue was settled as Science and John coffin saw that gel before publication and asked for the labels to be changed. Mikovits didn’t even do the western blots for Lombardi et al. The final images on Abagail Smiths blog are still not from the published gel or slide and are either doctored or from the raw lombardi data that she should not have had access to. She should now also be questioned by authorities about whether she had access to the original raw materials so they can trace who the real criminals are.

      • Kim McCleary
        20. Nov, 2011 at 10:51 am #

        Pol, the events are presented here in a straight chronology and are connected simply as a factor of timing. Science has not released any information about further action on the 2009 paper by Lombardi et al. This article by Jon Cohen for ScienceInsider provides the latest information on the investigation that Science Executive Editor Monica Bradford has said is being conducted: http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html. The legal action initiated by the Whittemores centers on property that has gone missing. Hopefully the authorities in these independent matters will be able to bring them to resolution.

        • Pol
          20. Nov, 2011 at 1:00 pm #

          A chronology of what? What links are you trying to make that don’t exist?

    11. Pol
      20. Nov, 2011 at 11:26 am #

      There is no chronology linking that proven false accusation against Dr Ruscettis western blots with the actions of the WPI against Dr Mikovits. How would you know what material has specifically gone missing? If certain gels are involved and again I ask how do you know what has gone missing, then Abagail Smith should now be investigated for her potential involvement as the pictures on that persons site, the last close up in particular, is not from the gel in the paper or the slide from the conference. I doubt you do know, so this is no chronology and I think you should remove it or place it as a separate article. It is wrong to link a civil case with a scientific paper of the importance of Lombardi et al. People could think the CAA don’t like robust science.

      • Kim McCleary
        20. Nov, 2011 at 12:06 pm #

        According to published reports, the property at issue in the civil case is “laboratory notebooks and kept other proprietary information on her laptop and in flash drives and in a personal e-mail account.” ScienceInsider, Nov. 14, 2011: http://news.sciencemag.org/scienceinsider/2011/11/lawsuit-filed-against-chronic-fatigue.html. The direction of particular investigations are better left to the authorities and many of us await the conclusions. In the meantime, we continue to aggressively pursue scientifically robust information that leads to objective diagnostics and effective treatments for CFS.

        • Pol
          20. Nov, 2011 at 12:23 pm #

          This story is not about research, so it is not linked. And when has the CAA asked for clinically validated assays or a replication study of Lombardi et al? Any other type of research is not robust.

    12. Pol
      20. Nov, 2011 at 11:51 am #

      There is still no chronology as you well know. You will probably delete this too. People can see who have been posting alledged materials from the raw Lombardi date are and they are hostile to Mikovits.

      • Kim McCleary
        20. Nov, 2011 at 12:07 pm #

        This blog is moderated and comments have to be approved for compliance with our posted guidelines before they appear on the blog. Apologies for the short delay between your submission(s) and approval.

        • Pol
          20. Nov, 2011 at 12:15 pm #

          You delete comments that still meet guidelines.

          • Pol
            20. Nov, 2011 at 12:21 pm #

            Sorry looks like you have approved the previous comment, but the site has blocked some of mine before.

          • Kim McCleary
            20. Nov, 2011 at 12:24 pm #

            It’s difficult to prove a negative, but we have deleted very few comments since this blog launched in May. Those that have been deleted were clearly in violation of the posted guidelines. Checking the archives, there are no comments submitted by “Pol” at this IP address among the deleted or spam posts.

            • Pol
              20. Nov, 2011 at 12:33 pm #

              According to the CAA.

    13. kathy d.
      20. Nov, 2011 at 8:05 pm #

      It’s morally reprehensible to use the full powers of the government against a scientist, even where there are disagreements. The manner in which Dr. Mikovits was fired and then locked out of her lab, the WPI lawsuit, and now the jailing and detention of a scientist are just inhuman and brutal.

      It’s like Davis and Goliath, only now it’s a wealthy, powerful, highly connected family and business acting vindictively and viciously against a woman scientist.

      See the Wikipedia entry on the Whittemores. It is shocking.

      It is also shocking, if true, that Dr. Mikovits’ attorney’s house was searched. Surely, the ACLU and the American Bar Association should be alerted on this. Attorneys and clients do have civil rights in this country, including against “unreasonable search and seizure.”

      I hope that a trial hearing in Nevada can bring out the truth — if an impartial trial can be held in that state at all. I’m not sure about that.

      This is like Galileo being held under house arrest by the wealthy and powerful.

      Where is scientific thought and pursuit? And in the overall and important sense, where are CFS sufferers in this melee? None of this helps us at all.

      Dr. Mikovits was scheduled to speak at Dr. Enlander’s seminar at Mount Sinai today. She was detained and could not attend. How does this help us? Her contributions were needed. We need all hands on deck, all minds that can add understanding to this mysterious illness.

    14. Derek Enlander MD
      21. Nov, 2011 at 2:24 pm #

      Dear Kim
      We have not been in contact since since our lunch in New York 10 years ago.
      It is sad that your blog is more interested about the jail rather than the conference that Judy was interested in attending.
      I think it would be a greater benefit if you reported on the standing room only conference that we held at Mount Sinai Medical Center yesterday, New Horizons in ME/CFS.
      This is the first time in years that a major US medical Center has formed a ME/CFS research and clinical center, privately funded by one of my patients.
      I am sure that one of your team was at the conference and could give you a write-up.
      regards
      Derek Enlander MD
      Mount Sinai Medical Center,
      New York

      • Kim McCleary
        21. Nov, 2011 at 2:53 pm #

        Hi Dr. Enlander,

        Glad to hear that your meeting went well in spite of the disappointment of not having Dr. Mikovits and Dr. Deckoff-Jones on the discussion panel as planned. We would be delighted to receive a guest post from you about the meeting and your new initiative at Mt. Sinai. If we’ve missed a formal announcement of the new research/clinical center, our apologies. Please provide us with a link, as we try to keep our information about current research (http://www.research1st.com/current-cfs-research/) as up-to-date and accurate as possible. (The research-related references on your practice’s site (http://www.enlander.com/publications.html) date back to 2002 and there doesn’t seem to be a release on the Mt. Sinai press page: http://www.msmc.com/press-promotion.) We look forward to sharing your news with our readers. Congratulations!

        Update: We see that Dr. Enlander’s clinical practice website has posted this conference report from Chris Cairns: http://www.enlander.com/comments/Conference_comment.pdf

        • Gabby Klein
          24. Nov, 2011 at 8:47 pm #

          Mr. Mc Leary,

          You really missed the mark here. By not attending the conference of what probably is the start of the most extensive research/clinic for ME/CFS in the world – Dr. enlander’s Mt. Sinai clinic which has amassed amazing scientists to study ME/CFS! Why was this not reported by you? You claim to keep us abreast of all the news for “us”. I don’t buy the fact that you didn’t “know” about it. If you didn’t, you should have. We relly on you to be there for us and support us. You chose to elaborate extensively on an inner dispute between one scientist and an institute that is ineffective above the biggest news to hit ME/CFS. What a disappointment to me – a 9 year suffering patient! I thought I could count on you. No more.

          • Kim McCleary
            25. Nov, 2011 at 10:38 am #

            Hi Gabby,

            I’m sorry we’ve disappointed you by not attending and reporting on the meeting at Mt. Sinai. According to others’ reports, it was put together in 3 weeks time. Unfortunately, we have a small staff and limited travel budget. At that time, Dr. Vernon and I were committed to the time-intensive process of the review of 26 research proposals received in response to our April 6, 2011 Request for Applications. The process involves dozens of peer reviewers and many hours of preparation and review sessions conducted along a very aggressive time schedule. We had to make adjustments to that schedule to accommodate the CFSAC meeting once it was scheduled, and we didn’t have further flexibility. Dr. Enlander’s clinic website has posted this report from Chris Cairns: http://www.enlander.com/comments/Conference_comment.pdf

            There have been many important announcements this year — the Schutzer proteome study, the Lights’ biomarker study (and $1 million new award from NIH), the new international ME criteria, the rituximab study results, the formation of the Chronic Fatigue Initiative, the $7-$1 return on our last group of funded grants — it’s tough to find agreement on what is the single “biggest news in ME/CFS,” even if you discount the XMRV-related announcements of recent weeks/months that have certainly attracted and sustained international press attention that we believe is important to report to our community.

    15. kathy d.
      22. Nov, 2011 at 3:03 am #

      I’m thrilled to hear about the SRO crowd at Dr. Enlander’s seminar at Mount Sinai Medical Center on Nov. 20, and cannot wait to read/hear all about it.
      Due to CFS problems, I couldn’t travel there, but have heard that there will be a video and I eagerly await its availability.
      Also, any and all write-ups summarizing the main points would be
      welcome and terrific.
      Reports about the research team are impressive.
      That there is now a ME/CFS research and clinical center at Mount Sinai is a big step forward for those of us who suffer from this dastardly disease. So glad that an individual was generous enough to fund this ambitious, yet greatly needed effort.
      All of us with ME/CFS avidly await the developments and news.

    16. Justin Reilly
      23. Nov, 2011 at 2:01 am #

      Can you please refer to HGRVs and not XMRV as Dr. M does not maintain that the viruses she found were XMRV anymore since Silverman revealed his mistake? Saying things like XMRV was a dead end and now we can move on to other things is extremely misleading.

    17. Darryl Turner
      23. Nov, 2011 at 5:25 pm #

      Can I make a suggestion, just Google “Fluoride Fatigue” by Dr Bruce Spittle and or, go to YouTube and type in, “A conversation with Darryl Turner.”

    18. Julie Thoren
      23. Nov, 2011 at 9:20 pm #

      From what I have had time to read online, it appears there are standards in industry and academia when it comes to research. I suspect the situation as presented with WPI vs. Dr. Mkovits has limited precedenc. I’m sure the lawyers will let us all know!

      That being said, it is not surprising that non-clinical participants (the Whittemores) and research staff experienced with the government (Dr. Mikovits) may have not been clear on the “ownership” of the grant, data, cell lines, etc.

      Business acumen appears to be with the Whittemores and Lombardi given their experience with real estate and investments. So much more will be determined by the behavior we observe going forward. Trust once lost is difficult to regain.

      It is quite obvious that there are MANY people and organizations with conflicting interests. That is one of the many problems to solving ME/CFS and other neuro-immune disorders. Too many barriers and more interested in financial gain, limiting financial risk due to culpability, and more than a few hoping to gain a Nobel.

    19. kathy d.
      24. Nov, 2011 at 3:03 am #

      I can understand a researcher being extremely attached to her research materials. They are a product of her own creativity, thinking and work. They’re her life’s work, and as important to that individual as paintings would be to an artist or symphonies and concertos are to a composer or a manuscript is to an author.

      It’s what she poured her time, energy, thinking and heart into and was dedicated and committed to helping to solve.

      It’s not the same as someone walking out with the cash receipts at a store.

      People are usually attached to their work products.

      Whether or not this was handled properly all the way around, obviously it was not. But it’s not absolutes here. There are mistakes all the way around. It’s a complex situation, which sounds like it’s been complicated all along. The more information that comes out, the more questions I have.

      I believe the materials in question are now back at WPI, according to their website. Where does it leave them? And where does it leave Dr. Mikowits?

      And my fundamental question continues to be: How does any of this help those of us with CFIDS? I don’t think it does, no matter what.

      Also, why put all of one’s eggs in one basket, as the adage goes? There are other research programs going on with many scientists, now Dr. Enlander’s center at Mount Sinai, Lipkin, Klimas, the Lights, Komaroff, and last, but very importantly, Drs. Fluge and Malle of Norway.

      More will be known to help uncover the mystery of CFIDS. I hope I’ll be able to benefit from it.

    20. Derek Enlander MD
      25. Nov, 2011 at 4:13 pm #

      Dear Kim
      Are you open to a proposal for replication of the Retuximab study, or has the deadline passed.
      Dr David Bell and I are interested in this replication which would be performed in the Mount Sinai ME/CFS Group.
      Best regards
      Derek

      • Kim McCleary
        26. Nov, 2011 at 9:18 am #

        Hi Derek,

        For our current round (RFA of April 6, 2011), Letters of Intent were due June 3 and full proposals (from those invited to submit) were due Sept. 30, 2011. There is considerable interest in advancing our understanding of how these monoclonal antibody therapies are working, so I will follow-up with you by email to explore other possibilities.

        Kim

        Link to RFA: http://www.cfids.org/research/rfa-2011.asp

    21. Carl Robinson
      29. Nov, 2011 at 10:27 pm #

      This illness has been prevalent since the 1980′s, mirroring very similar rates as HIV…….At what point can we get real and discuss a cover-up at the highest levels of our government. While I appreciate the child like passion of people who continue to investigate little clues…….nothing ever happens!!

      This whole research community is a facade……..the truth is being hidden by those who created this biological weapon……I would be more than happy to debate anyone on this matter!!

    22. Ralbal88
      07. Dec, 2011 at 8:03 am #

      If the general public learned that there was a retrovirus, similar to HIV that caused these irreversible symptoms, there would be outrage. It sounds like a cover-up.

    23. Nancy Allen
      12. Dec, 2011 at 12:09 am #

      I have been a leader of a large support group since 2001, and have spoken in depth with ( many) hundreds of individuals and families over the years. I get new calls every week. I think Carl’s comment,” This illness has been prevalent since the 1980s . . . ” seems correct. A few years ago I got one very interesting phone call from an older man ( business entrepreneur/very informed) who told me about research beginning at least by the 1970s ( Dept. of Agriculture) for a retrovirus that could attack the gypsy moth -could be spread through the air. As a result of Dr. Mikovits’ research I followed up a bit on this area of insect molecular genetics and found this, ” Retroviral vectors have been developed by genetically modifying the Moloney murine leukemia virus so that it contains the G envelope protein from vesicular stomatitis virus.” These retroviral vectors have a very wide host range, . . . etc. ( in Insect Molecular Genetics: An Introduction to Principles and Applications by Marjorie A. Hoy)

      At the “Division of Research Safety ” site there are these comment on the Moloney Murine Leukemia Virus: The host range depends on the envelope – AM photrophic env gene allows infection of murine and non-murine cells, including human. This site recommends that researchers be careful with infected urine/fluids – to disinfect with 10% bleach.

      The researchers involved in retroviral vector control for various insects may have something valuable to tell us. Of all places for one of the original outbreaks -Incline Village – in the middle of nowhere, but surrounded by forests being devastated by bark beetles. ( If the “men in black” show up at my doorstep – I’ll let you know !)

    24. Job
      06. Jan, 2012 at 6:12 pm #

      The CDC MAKES these DISEASES. The government works for the devil cut and dry.

    25. kathy d.
      17. Mar, 2012 at 6:15 pm #

      I’m putting this up here as I don’t know where else to put it, but WPI just finally lost any credibility or standing with their annual report posted online with this tremendous and insulting error.

      I want to raise, even though it’s off-topic that WPI has its annual report in pdf format online. I think it bears close scrutiny. However, glib advertising text aside, I was absolutely shocked that there is a quote from the Holocaust victim, Anne Frank, at the end, with a photo of clasped hands.

      As someone of Jewish background, I find that this is just crass opportunism at its worst, using the Holocaust for financial gain. It sends WPI over the ends of the earth to me and makes them lack any credibility, integrity or principles.

      I hope others object to this. There is NO comparison to Anne Frank and the millions of others who died in that catastrophe and the fundraising projects of a private organization!
      NONE!

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