From the Reno Gazette Journal, 17 December 2011. (Story by Lenita Powers)
The Whittemore Peterson Institute for Neuro-Immune Disease in Reno made headlines around the world in 2009 when news spread that its researchers had discovered XMRV, a new retrovirus that might lead to breakthroughs in the treatment of chronic fatigue syndrome and other neurological diseases.
Two years later, aspirations of Reno becoming the mecca of a medical breakthrough that could lead to treatment for chronic fatigue, an illness that affects an estimated 17 million people worldwide, evaporated when the research was discredited.
But the latest blow came this year when Dr. Judy Mikovits, the Whittemore Peterson Institute's lead researcher behind the discovery of XMRV, was fired in September for “insubordination and insolence.”
In November, she was arrested on felony charges for allegedly enlisting a fellow researcher to steal research notebooks and other proprietary materials from the institute.
Annette Whittemore, president and founder of the institute, calls the discredited research and Mikovits' arrest “a bump in the road” that will not stop the institute's commitment to finding the cause and, she hopes, a cure for chronic fatigue syndrome.
“The whole issue, until it is resolved, has a lot of people confused and wondering whether we will be going forward and whether the federal government is still going to be committed,” she said, referring to federal research grants and other funding. “There is more federal funding for this disease than ever, and they're deeply committed.”
Two current grants from the National Institutes of Health totaling about $660,000 were made to the WPI, not to Mikovits, Whittemore said, so those funds will remain with the institution.
More research under way
The WPI is continuing its research into the underlying causes of neuroimmune diseases, including finalizing two research projects involving gamma retroviruses and several studies related to the innate immune system.
“We're as committed as ever,” Whittemore said. “Ultimately, this institution is looking for the right answers, and nothing else matters. So we are going to continue to do the good work and find the answers to the best of our ability and make sure others can reproduce and confirm that good work.”
Meanwhile, the implosion of the institute's research with XMRV and the firing of Mikovits has frustrated chronic fatigue syndrome patients.
“I was cautiously optimistic at beginning,” said 73-year-old Penny McCracken, a Fallon resident who has struggled with the illness since 1981.
“I'm just kind of resigned now,” she said. “It's like, ‘Oo-ha, here we go again.' We've seen promising things fall apart before.”
Whittemore is keenly aware of the disappointment, anger and even mistrust voiced by people with chronic fatigue syndrome who have commented on WPI's website, blogs and other sites on the Internet. In a recent interview at the institute's office, she recently addressed those comments as well as what she said was the real reason Mikovits was fired.
At the nearly two-hour interview, Whittemore was joined by Vincent Lombardi, who has replaced Mikovits as the WPI's lead researcher.
Whittemore refuted claims being made on the Internet that Mikovits was fired because the Whittemore family was trying to make money from tests being conducted to detect XMRV in patients with chronic fatigue, but Mikovits opposed the $400 to $650 cost for the tests as being too expensive.
Whittemore said WPI did not receive funds from the tests, and she said the comment by one person on the Web who called the Whittemores greedy was “very hurtful. Our family has given millions of dollars over the last 40 years in support of charitable organizations, including WPI,” she said.
VIPdx, the Reno laboratory that conducted the tests, is a privately owned laboratory and is not affiliated with WPI, Whittemore said. VIPdx did pay to license the use the technology from WPI to do the testing, but that money was used by WPI to help fund its research.
And, despite news reports to the contrary, Mikovits was not fired because she refused to share her research cell lines with other WPI scientists, Whittemore and Lombardi said.
“In fact, those cell lines weren't shared,” Lombardi said. “They belonged to me, and she took them.”
Lombardi said he had asked Japanese researchers who had built a cell line to share it with him.
“When you publish research using a cell line you have developed, then you're kind of obligated to share it with anybody who wants to use it, and they said they would be happy to do that,” he said.
Lombardi said the package with the cell line has his name on it, but it apparently was sent to Mikovits' laboratory.
“She took them and never told me they came. When I called FedEx to track them down, I found out that she had them. I asked her for them back, and she said ‘no' when they weren't even hers. So I talked to Annette.”
Whittemore said she confronted Mikovits, who refused to return the cell line to Lombardi, so she fired her for insubordination.
“And what she did interfered with (Lombardi's) ability to complete his study,” Whittemore said.
Petitioners support Mikovits
Mikovits, who is facing a civil lawsuit and criminal charges filed in Washoe District Court, could not be reached for comment. Her lawyer, Scott Freeman, also declined to discuss his client's case.
And researchers who had worked with her at the National Cancer Institute or were listed as co-researchers on the XMRV article published in Science refused to return telephone calls or hung up when they were contacted by the Reno Gazette-Journal.
However, Orlando, Fla., resident Patricia Carter has created an online petition in support of Mikovits that garnered about 380 signatures, which Carter said would be sent to the U.S. Senate and the Whittemore Peterson Institute. The petition calls for the institute to “treat Mikovits fairly,” return to her any research material that was hers and refrain from taking any legal or other action that would “intentionally damage Dr. Judy Mikovits' reputation of credibility.”
However, Whittemore said Mikovits had signed a contract stating that all research material belongs to the institute.
Peterson's new center
Earlier this year, a new research player came onboard in search for a cause and treatment for neuroimmune diseases.
Dr. Daniel Peterson, the doctor who treated hundreds of Chronic Fatigue Patients during an outbreak in Incline Village in the 1980s, resigned from the Whittemore Peterson Institute that bears his name and opened his own nonprofit research foundation in Incline Village.
Neither Peterson nor the director of the Simmaron Research Inc. returned repeated telephone calls, but the research foundation's website cites its mission as “playing a key role in bringing science to the clinician to better diagnose, treat and manage patients” who have chronic fatigue syndrome and myalgic encephalomyelitis.
Simmaron Research is working in collaboration with Sonya Marshall and colleagues at the Bond University of Australia and Konnie Knox with the Wisconsin Viral Research Group.
K. Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, said the high-profile split with Mikovits at the Whittemore Peterson Institute, the investigation by Science into the XMRV research paper and ensuing legal actions “are of deep concern” to many of those 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,” McCleary said. “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.”
She said her organization will continue to focus on research to improve the diagnosis and treatment of chronic fatigue syndrome, “and efforts to end the life-altering disability, stigma and isolation CFS imposes.”
For 17-year-old Rebecca Ghusn of Reno, who suffers from chronic fatigue syndrome, the failure to link XMRV to her illness is just another false lead in the scientific hunt to find a cause and a cure.
“You always hope something will happen when they find a lead, but they had lots of leads, so this is just one step forward and two steps back,” she said. “And I think the whole XMRV thing was blown out of proportion, but, yes, it was disappointing.”
UNR research untainted
The WPI is not part of the University of Nevada, Reno, but the institute's office and laboratories are housed in UNR's Center for Molecular Medicine, a state-of-the-art facility that opened August 2010 and to which the Whittemores donated an undisclosed amount of money.
But the widely reported fact that the XMRV research has been discredited and the lawsuits pending against Mikovits that have now enveloped WPI won't impugn the credibility of the research being conducted by the university's scientists, said Marc Johnson, UNR's interim president.
“The Whittemore Peterson Institute is located on our campus, although it is independent of the university,” he said. “The institute is in the midst of a challenging time, and the university is noted in many media reports as the location of the institute. However, this geographic relationship does not detract from or even relate to the outstanding caliber of work being done by our university researchers.”
Johnson said Annette and Harvey Whittemore have been good friends of the university and have made significant contributions to the community and state.
“We wish them well in their scientific endeavors,” he said.
2005: Annette Whittemore and her husband, the Nevada lobbyist, lawyer and developer Harvey Whittemore, establish the nonprofit Whittemore Peterson Institute for Neuro-Immune Disease in an effort to help their daughter, Andrea Whittemore-Goad, and the millions of others who suffer from chronic fatigue syndrome.
Also in 2005: The Nevada Legislature approves $10 million toward the construction of a new research facility, the $77 million Center for Molecular Medicine, at the University of Nevada, Reno to support a joint project with the University of Nevada School of Medicine and the Whittemore Peterson and Nevada Cancer institutes.
Oct. 8, 2009: An article on the Whittemore Peterson Institute's research and the discovery of a new infectious human retrovirus, XMRV, detected in Chronic Fatigue Syndrome patients appears in the prestigious journal Science.
Jan. 19, 2010: In another issue of Science, British researchers question the accuracy of the Whittemore Peterson Institute's study after their tests failed to find XMRV in the blood of 186 people with Chronic Fatigue Syndrome.
March 2011: Judy Mikovits resigns as WPI's research director and is named director of transitional research. Vincent Lombardi, Mikovits' co-researcher, is named director of basic research.
Sept. 22, 2011: Authors of the Whittemore Peterson Institute's 2009 research paper, including lead researcher Mikovits, publish a partial retraction of the findings in the journal Science.
Sept. 29, 2011: Annette Whittemore, president of the institute, fires Mikovits for insubordination after she refuses Whittemore's order to return research cell lines to fellow researcher Lombardi, who had ordered them from Japan for his research work. According to Whittemore, Mikovits had intercepted the cell lines that were delivered to her office by mistake even though the package was addressed to Lombardi.
Sept. 30, 2011: Allegations are made of image manipulation in the research linking chronic fatigue syndrome to XMRV. The journal Science has been investigating allegations that figure in the report was manipulated, according to the Chicago Tribune.
Oct. 4, 2011: Whittemore Peterson Institute officials are able to unlock the door to Mikovits' private office at the institute. Approximately 18 research notebooks as well as other materials are missing.
Nov. 18, 2011: Mikovits, who has been living in California, is arrested on a felony arrest warrant in Ventura, Calif., based on allegations from the institute that she enlisted the help of an assistant researcher at the institute to remove research notebooks and other proprietary information from her former office at the institute. Also in November, the institute files a civil lawsuit against Mikovits in Washoe County District Court alleging breach of contract.
Nov. 28, 2011: Mikovits waives extradition and returns to Reno, turning herself in to University of Nevada, Reno campus police, the agency that sought the warrant for her arrest. She is booked into Washoe County Jail for a short time before being released. UNR police obtain the missing notebooks and materials.
Nov. 29, 2011: Mikovits is arraigned in Washoe District Court on two felony charges: possession of stolen property and conspiracy.
Source: Reno Gazette-Journal research and Whittemore Peterson Institute
The Whittemore Peterson Institute
» The nonprofit Whittemore Peterson Institute for Neuro-Immune Disease was created in 2005 by its founder and president Annette Whittemore of Reno with the help of Dr. Daniel Peterson, the Incline Village physician who became renowned in the field of Chronic Fatigue Syndrome after treating an outbreak of cases there in the mid-1980s. (No longer affiliated with WPI, Peterson opened his own research foundation last March in Incline Village.)
» Although the WPI is separate from the University of Nevada, Reno, it is located on the campus in the Center for Molecular Medicine.
» WPI's stated mission is to conduct research that will lead to effective treatments for patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in lifelong disease and disability.
» WPI's goals also include research of neuro-immune diseases such as myalgic encephalomyelitis and Chronic Fatigue Syndrome, fibromyalgia, atypical multiple sclerosis and autism; developing therapeutics, diagnostics and prevention strategies for this spectrum of diseases; and advancing and supporting medical education and physician training in these areas.