Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal): Media Round up 10
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This is the tenth Round up of media coverage of the Whittemore Peterson Institute XMRV study published, last week (08.10.09), in Science journal. Round ups also include commentary from patient organisations, patient community websites and bloggers and links for related material.
The European ME Alliance www.europeanmealliance.org
Eight-Country European ME Alliance Issues Kudos to WP Institute, Pledges Cooperation
October 16, 2009
The European ME Alliance www.europeanmealliance.org is a group of European organizations formed less than a year ago to encourage more ME/CFS biomedical research funding – Belgium, Denmark, Ireland, Germany, Norway, Sweden & UK.
ME Alliance Press Release Oct 16:
The European ME Alliance (EMEA) wish to congratulate the Whittemore- Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.
The members of EMEA recognize that the staff at WPI are performing research of the highest quality.
The publication of this research in Science magazine is itself an amazing achievement.
This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.
EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future.
Signed by all members of the European ME Alliance:
Belgium – ME/CFS Association (Nieuwrode, Belgium)
Denmark – ME-NetDK
Ireland – Irish ME Trust
Germany – Fatigatio e.V.
Norway – Norges ME-forening
Spain – Liga SFC
Sweden – Riksföreningen för ME-patienter
UK – Invest in ME
The European ME Alliance
Tate Mitchell reports via Co-Cure mailing list 16 October 2009
“The CFIDS Assoc. just posted some updates on their Facebook page, including a link to an interview with Laura Hillebrand, author of Seabiscuit, by The New Yorker, the Oct. 29-30 CFSAC meeting agenda is published, which is to include a presentation by Dr. Daniel Peterson entitled ‘XMRV Association with CFS’, and CFIDS Assoc. Scientific Director Suzanne Vernon writes about the new XMRV findings”
Oct. 29-30 CFSAC agenda
Interview with Laura Hillebrand
By Suzanne D. Vernon, PhD
Scientific Director, The CFIDS Association of America
The announcement on October 8, 2009, that an infectious retrovirus called XMRV (xenotropic murine-related retrovirus) was linked to CFS, could be the game-changing scientific event we have been waiting for. Whether XMRV provides the long-awaited causal link will depend on the findings described in the Science paper being replicated by another laboratory in another group of CFS patients. To help clarify what we know, let’s review the findings.
Dr. Judy Mikovits and her team at the Whittemore Peterson Institute for Neuro-immune Disorders (WPI) made a very insightful connection three years ago. XMRV was first described in prostate cancer in 2007 by investigators at the Cleveland Clinic, who also reported that XMRV-positive prostate cancer patients have alterations in RNase L, an antiviral immune system pathway. The WPI investigators knew that RNase L activity is also altered in blood cells from CFS patients and they made the decision to look for XMRV in CFS patients with this immune defect.
When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Dan Peterson has been caring for and researching CFS patients since the 1984 Incline Village outbreak, so he identified CFS patients with prolonged disabling fatigue, cognitive impairment, and documented laboratory immunological abnormalities (including altered RNase L activity) to hunt for XMRV.
The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS patients tested and in 8 of 218 (3.7%) healthy control subjects. The Cleveland Clinic confirmed the presence of XMRV in a subset of these same CFS cases, 7 of the 11 (64%) samples from WPI. The Cleveland Clinic researchers found that the CFS XMRV was similar to prostate cancer XMRV, and not a mouse virus (murine leukemia virus) that could have been a contaminant explaining the discovery.
The investigators designed several new assays to understand XMRV. They looked to see if XMRV was expressed in peripheral blood mononuclear cells (PBMCs) of CFS patients. PBMCs from 19 of 30 CFS patients expressed XMRV proteins compared to 0 of 16 PBMC samples from healthy controls. They also wanted to know which cells harbored XMRV; they found it in T and B cells in the blood of one CFS patient. The investigators looked to see if the XMRV from CFS patients was infectious. Both blood cells and plasma (the cell-free fraction of blood) from XMRV-positive CFS patients were able to transmit this virus to a susceptible cell line, indicating infectiousness in laboratory culture. Finally, they wanted to know if XMRV stimulated the immune system to produce antibodies. Plasma from 9 of 18 CFS patients had antibodies that reacted with a virus protein similar to that found in XMRV, compared to no reaction from plasma of 7 healthy controls.
This Science paper tells us that XMRV plays a possible role in CFS pathogenesis in these CFS patients. How much we can generalize these findings to other CFS patient populations? That answer will depend on the results of replication studies.
The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study. Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.
While these exciting studies of XMRV continue, the CFIDS Association continues its support of our funded investigators. It’s important to remember that HIV was discovered to be the cause of AIDS 26 years ago, but worldwide research on AIDS treatment, cure and prevention continues today. Our funded investigators’ research on why EBV triggers CFS, whether ion-channel receptors are markers of fatigue, why CFS patients have higher rates of leaky gut, why CFS patients have slow blood flow to the brain, why CFS patients have metabolic disturbances in the brain, and how we can bring this information, as well as XMRV, together using powerful computational tools are all important as we work together to solve CFS.
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.
Supporting online material for Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009.
A new virus for old diseases? Coffin JM and Stoye JP. Science 8 October 8 2009.
Information about the Association’s research program:
Professor Andrew Lloyd AM
Director, Centre for Infection and Inflammation Research University of New South Wales
New Retrovirus – Comments by Professor Andrew Lloyd
©2002 – 2009 ME/CFS Society of NSW Inc.
RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history…
Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the Cause of Fatigue Syndrome?” – posted online Oct 15, 2009
“But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement
Dr. Shelekov looked puzzled and maybe a little skeptical. But Dr. Marc Loveless, sitting next time to him said, “Dr. Shelekov, this man (meaning me) is telling you the truth. I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”
I immediately said to Dr. Loveless that “YOU have to use that line in every speech you give on this illness for the rest of your life!” (in 1994, Dr. Loveless gave this same testimony under oath to the US Congress).
Science Friday on NPR
“Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide from 2-4pm Eastern time as part of NPR’s ‘Talk of the Nation’ programming.”
Podcast: Virus Tied to Chronic Fatigue Syndrome
Clicking on this link will start download of mp3 Podcast from Science Friday site:
Patient community websites and blogs
Cort Johnson’s Phoenix Rising website
The news on XMRV is breaking fast and items are being added regularly to the XMRV Resource Center on Phoenix Rising. The Resource Center has links to scientific articles, analyses by chronic fatigue syndrome specialists (check out the video by Dr. Klimas on CFSKnowledge Center), media reports, Q&A’s, blogs and more.
Hillary Johnson (journalist and author of Osler’s Web)
Science and Technology News
Hemispherx Biopharma Finds New Retrovirus in Chronic Fatigue Syndrome
Rochester, New York 10/16/2009 08:55 PM GMT (TransWorldNews)
Hemispherx Biopharma, Inc. (AMEX: HEB) has announced a discovery of a novel retrovirus in Chronic Fatigue Syndrome (CFS). The retrovirus may shed light on the potential mechanism of action of Ampligen, an experimental therapeutic, in CFS. CFS is a debilitating disease of unknown etiology that affects 17 million worldwide…
Fibromyalgia & CFS Blog
UPDATE: Ampligen for Chronic Fatigue Syndrome
Friday October 16, 2009
NEWSBRIEF: We now have an update on the FDA’s much-delayed decision on Ampligen for chronic fatigue syndrome that explains why we’ve been kept waiting for so long….
Links to scientific coverage
Whittemore Peterson Institute Q and A
Whittemore Peterson Institute Press Release
Science News: Retrovirus might be culprit in chronic fatigue syndrome
New Scientist: Chronic fatigue syndrome linked to ‘cancer virus’
Scientific American: Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
Nature: Virus linked to chronic fatigue syndrome
NIH News: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome
Previous ME agenda Media Round ups
Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at
Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa
Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L
Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299
Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280
Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v
Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272