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The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) is a charitable foundation and research institute located in Reno, Nevada and consisting of a small private pathology laboratory. WPI is known for a controversial report, published in 2009 in Science, that xenotropic murine leukemia virus-related virus (XMRV), a retrovirus, is associated with chronic fatigue syndrome (CFS). The laboratory is affiliated with the University of Nevada and was founded by the parents of a CFS patient, Annette and Harvey Whittemore, and Daniel Peterson, a CFS physician who treats the Whittemore's daughter. Annette Whittemore is the president of the Institute, and Peterson serves as part-time Medical Director. WPI is scheduled to open its new research facility, which will be housed in the University of Nevada, Reno's Center for Molecular Medicine, in 2010.
History
The Whittemores describe their motive for founding the CFS research institute as a desire to help their daughter, Andrea Whittemore-Goad, and other CFS patients. Their daughter developed symptoms as a child and was diagnosed with CFS at the age of twelve. The Whittemores state that numerous doctors were unable to help her, and that the first improvement in her condition came only ten years later, when she was treated by Daniel Peterson with Ampligen an experimental antiviral drug subsequently rejected by the United States Food and Drug Administration (FDA) in 2009. Interviewed by The New York Times in 2009, Annette Whittemore said that her daughter, then 31, had experienced a health decline, and attributed her involvement in research to a desire to "get something for her as soon as possible...I can't lose my daughter". In the Whittemores' opinion, government agencies have ignored CFS patients and doctors have marginalised them. They also believe that the syndrome has an infectious cause, charging scientists and doctors with unfairly rejecting the virus theory of CFS and stalling research progress. The Whittemores felt that "if there was a place of our own where we could find the answers, we could do it more quickly" and formed a CFS research institute in 2004. The Whittemore Peterson Institute for Neuro-Immune Disease has also been reported variously as "The Whittemore Peterson Institute for Chronic Fatigue" and the "National Chronic Fatigue Syndrome Institute". Research began in 2006. The laboratory is scheduled to move into a University of Nevada, Reno building and officially open in 2010.
Mission
The Whittemore Peterson Institute for Neuro-Immune Disease states its goals on its website:
- "To facilitate and advance patient care";
- To "research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism"
- To "develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases"; and
- "To advance and support medical education and physician training".
Annette Whittemore stated that the founders envisioned WPI as an integrated facility for CFS treatment, education and research, and wanted a place where they could find answers more quickly. They investigated the illness from a neuro-immune perspective, and looked for an infectious cause which they thought had too often been dismissed. Judy Mikovits, the scientific director of WPI, said that as research progressed, they started to realize that patients of other diseases with unknown etiologies might benefit from their findings.
The Institute is novel in its of grouping of these diseases into a single "neuro-immune" class, which it asserts may be "caused by acquired dysregulation of both the immune system and the nervous system"; however, there is no expert consensus on the aetiology of these diseases.
Funding and support
Initial funding for the institute was provided by the Whittemores, who in 2004 committed $5 million. The Whittemore family's wealth derives from business activities including real estate, land development and joint ownership of a gas company and an energy drink. Harvey Whittemore is also a prominent lawyer and influential lobbyist. The Whittemores successfully lobbied the Nevada legislature for support and arranged an affiliation with the University of Nevada, Reno, the Whittemores' alma mater. The Nevada legislature agreed to provide $3 million to fund the institute. The Whittemores secured $10 million from the governor and legislature for a new building at the University of Nevada's medical institute, where the WPI would share space. The Whittemores have obtained contributions as large as $50,000 from friends, to as little as a few dollars from individuals with CFS who are ill, unemployed, and poor, but passionate to help. The institute has received federal funding through the political support of Nevada's senators John Ensign and Harry Reid, the latter a close personal friend of Harvey Whittemore.
Supplemental funding for WPI comes from the sale of XMRV diagnostic tests by Viral Immune Pathology Diagnostics (VIP Dx), a company owned by the Whittemores and co-founded by one of WPI's lead investigators. In September 2009, the WPI announced that Judy Mikovits and collaborator Jonathan Kerr of St. George’s College in London had been awarded a $1.6 million, 5-year grant by the National Institute of Allergy and Infectious Diseases for their proposal to develop new "strategies to decipher the pathophysiology of chronic fatigue syndrome".
Organisation
Annette Whittemore serves as president of the WPI. Daniel Peterson is medical director. Two lead investigators have been hired, a virologist and an immunologist. The virologist, Judy Mikovits, serves as WPI's scientific director. Mikovits worked at the National Cancer Institute in Maryland for 22 years, during which time she earned a PhD and completed postdoctoral research. The second lead investigator, Vincent Lombardi, is a biochemist who completed PhD training in protein chemistry at the University of Nevada, Reno, in 2006. Prior to receiving his degree, he co-founded RedLabs USA, Inc., now VIP Dx. The WPI website states that WPI workers have been hired from the National Cancer Institute, the National Institute of Aging, the La Jolla Institute for Allergy and Immunology and Kings College, UK.
XMRV/CFS research
In October 2009, researchers associated with WPI, the Cleveland Clinic, and the National Cancer Institute reported in the journal Science that a retrovirus known as xenotropic murine leukemia virus-related virus (XMRV) is associated with chronic fatigue syndrome. The authors of the report included Daniel Peterson and Whittemore Peterson's lead researchers, Judy Mikovits and Vincent Lombardi. Robert Silverman, co-discoverer of XMRV, also contributed. XMRV DNA was found in the blood of 68 out of 101 CFS patients and in 4% of samples from healthy people, using nested PCR. The study also reported that antibodies specific to several mouse leukaemia viruses detected proteins present in 19 of 30 CFS patients; that antibodies from several CFS patients detected a mouse leukaemia virus envelope protein; that co-culture of a prostate cancer cell line or a T-cell line with patient peripheral blood mononuclear cells (PBMCs) produced proteins recognised by anti-MLV antibodies; and that two patient samples resulted in apparent infection of primary T-cells. All tests had detection rates >50% for CFS patients and no detections for a maximum of seven healthy controls. The authors reported a highly significant association between XMRV and CFS, and suggested that XMRV may be a contributing factor in the pathogenesis of CFS.
In later press releases, WPI scientists revised their estimate of XMRV prevalence in their sample of CFS patients to over 95%, based on the presence of XMRV antibodies in blood plasma tests, and proposed the name "X-associated neuro-immune disease" (XAND), to encompass CFS and related illnesses.
Media coverage and controversy
The WPI study was followed by extensive media coverage, and Discover Magazine listed it as one of the top 100 stories of 2009.
In a follow-up study published in January 2010, researchers at Imperial College and King's College, London, reported that they were unable to find XMRV in any of 186 CFS patients. They used two independent PCR detection techniques capable of amplifying a single copy of the XMRV genome per reaction. The United Kingdom group implied that the Nevada team's results could be explained by laboratory contamination and concluded that an XMRV/CFS connection is unlikely, at least in the UK.
The contradicting results from Imperial College sparked what The Economist dubbed a transatlantic "fight" and Discover Magazine covered as a "Scientist Smackdown". Supporters of the two teams traded accusations of conflicts of interest, technical sloppiness and failure to care about patients. Judy Mikovits, WPI's lead investigator, accused the British team of scientific fraud, paying to publish their results and participating in an insurance company conspiracy to discredit WPI.
The publication of the WPI study in Science reportedly sent many patients hurrying to doctors for tests and antiretroviral drugs. The Whittemore's company VIP Dx also announced the introduction of a diagnostic test XMRV at $650 shortly after the Science publication appeared. Some scientists, including Coffin and McClure, feared that the VIP Dx took advantage of the hunger of doctors and patients for information by offering the $650 diagnostic test for XMRV. Coffin observed that the original paper established the virus neither as a cause of CFS nor as a viable marker, such that the utility of the test for a patient or a physician was unclear. McClure also commented, "we take no pleasure in finding colleagues wrong or dashing the hopes of patients, but it's imperative the truth gets out."
VIP Dx asserts that it developed its XMRV test as a more expert alternative after a different company began offering one. Vincent Lombardi, the lead author of the WPI paper, founded VIP Dx and now, according to WPI, acts as an unpaid consultant for VIP Dx in helping to set up and manage the testing program. He argues that the test is useful and that test results also bolster the science in the original paper; he stated that tests have detected XMRV in 36% of submitted samples, including a few from the United Kingdom.
References
- "Whittemore Peterson Institute - How To Help" (HTML). Retrieved 10th January 2010.
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(help) - ^ Boseley, Sarah (06 January 2010). "Research casts doubt over US chronic fatigue virus claim. UK study fails to find proof of headline-grabbing American study into test for ME/CFS". The Guardian. UK.
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(help) - ^ "About the Whittemore Peterson Institute" (PDF). Retrieved 10th January 2010.
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(help) Cite error: The named reference "About_PDF" was defined multiple times with different content (see the help page). - ^ "A fight over the cause of a mysterious disease". The Economist. UK. 07 January 2010.
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(help) - ^ Sam Kean (15 Jan 2010). "An Indefatigable Debate Over Chronic Fatigue Syndrome". Science. 327 (5963): 254–255. doi:10.1126/science.327.5963.254.
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(help) - ^ Powers, Lenita (13 January 2010). "Reno researchers dispute British challenge to virus discovery". Reno Gazette-Journal. Retrieved 13 January 2010.
- ^ Grady, Denise (11 October 2009). "A Big Splash From an Upstart Medical Center". The New York Times.
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(help) - "Center for Molecular Medicine Frequently Asked Questions" (HTML). Retrieved 26th January 2010.
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(help) - ^ Marcus, Amy Dockser (12 October 2009). "Cancer-Causing Virus Linked to Chronic Fatigue". The Wall Street Journal.
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(help) - ^ Johnson, Cort (20 April 2008). "Annette Whittemore and the Making of the Whittemore Peterson Institute in Reno". ProHealth.com. Retrieved 06 January 2010.
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(help) - George, John (02 December 2009). "FDA rejects Hemispherx's chronic fatigue drug Ampligen". The Philadelphia Business Journal.
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(help) - ^ Grady, Denise (12 October 2009). "Is a Virus the Cause of Fatigue Syndrome?". The New York Times.
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(help) - ^ Hagar, Ray (07 June 2007). "Washoe projects receive funding". The Reno Gazette Journal. Reno, Nevada.
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(help) - Annette Whittemore at the Davidson Academy
- "Our Mission". Whittemore Peterson Institute. Retrieved 02 Feb 2010.
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(help) - Myers, Dennis (03 March 2005). "Public power, private man". Reno News Review.
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(help) - Ensign earmarks
- Reid Press Release, 13 December 2009
- Nevada Sen. Reid lists nearly $100 million in projects to Nevada (Television News). Reno, Nevada: KRNV News 4. 14 December 2009.
- Neubauer, Chuck (20 August 2006). "Desert Connections". The Los Angeles Times. Los Angeles, California.
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(help) - XMRV testing, CFIDS.org
- "Whittemore Peterson Institute for Neuro Immune Disease, In The News" (HTML). Retrieved 14th January 2010.
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(help) - National Cancer Institute biography
- WPI's XMRV team
- WPI: "Research Profiles"
- ^ Lombardi VC, Ruscetti FW, Das Gupta J; et al. (2009). "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome". Science. 326 (5952): 585–9. doi:10.1126/science.1179052. PMID 19815723.
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ignored (help)CS1 maint: multiple names: authors list (link) - WPI 08 October 2009 Press Release Accessed 13 January 2009.
- Neimark, Jill, "Top 100 Stories of 2009 #55: Virus Invades Human Genome and Causes... Chronic Fatigue?", Discover, Jan-Feb 2010 (Special)
- Erlwein, O; et al. (2010). "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome". PLoS ONE. doi:10.1371/journal.pone.0008519. PMID 20066031.
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(help)CS1 maint: unflagged free DOI (link) - ^ "Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?". 80beats, Discover Magazine. Discover Magazine. 06 January 2010. Retrieved 06 January 2010.
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(help) - "Official Statement from the Whittemore Peterson Institute Regarding UK Study" (PDF) (Press release). Whittemore-Peterson Institute. 6 January 2010. Retrieved 29 January 2010.
- "Diagnostic Test for Xenotropic Murine Leukemia Virus-related Virus" (HTML) (Press release). VIP Dx. 23 Oct 2009. Retrieved 2 Feb 2010.