XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7

XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7

WordPress Shortlink for this posting: http://wp.me/p5foE-2aa 

Media

NHS Choices

http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx

The “Behind the Headlines” item – “Does a virus cause ME?” has now been shifted from the Category “Mental Health” to the Category “Neurology”.

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PULSE

http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4123887&c=1

Very brief report and comment section

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BMJ News

http://www.bmj.com/channels/news.dtl

No coverage whatsoever.

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Wikipedia

Wikipedia stub: Xmrv http://en.wikipedia.org/wiki/Xmrv

Wikipedia article: Retrovirus http://en.wikipedia.org/wiki/Retrovirus

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Whittemore Peterson Institute

Source: Lois Ventura www.name-us.org    13 October 2009

Lois writes, “Below is a response I received following a thank you note to WPI. Patients and others may find the info helpful. Angelina Gordon gave permission to repost unedited only.”

Thank you for your interest in the Whittemore Peterson Institute and our new research findings on XMRV. We have been overwhelmed with both your encouraging comments and the volume of email and traffic to our web site. We are working on answering many of the general questions posed in the last few days. Individual specific questions will be evaluated and responded to as appropriate.

- XMRV Testing: The number one request has been “how do I get tested for XMRV?” The WPI is negotiating an agreement with a clinical laboratory to allow for limited testing. These limited test services will be made available as soon as possible and we will provide information on this website as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back to our website for updates.

- Research Studies: If you are interested in possibly being selected to participate in ongoing or future WPI research studies, we are working on an interactive form for our website. It should be available in the next few days, and we encourage you to complete the form at Whittemore Peterson Institute for Neuro-Immune Disease. While every study has specific requirements and not all who volunteer will be accepted, your willingness to participate is both crucial and deeply appreciated.

- Becoming a Patient: WPI is currently constructing our new home on the campus of the University of Nevada School of Medicine. It will open in the summer of 2010. At this time we are not able to accept patients, but would be happy to add your name to our interest list. With the rapid pace of research discoveries, we hope that there will be new treatment and diagnostic options available when we celebrate the opening of the new building.

The discovery of XMRV in ME/CFS patients opens an entire new avenue of neuro-immune disease research and our discovery has brought to this field world-renown immunologists and retrovirologists. Our team of collaborators is working daily to translate our discoveries into new treatments as soon as possible.

The discovery also raises many new questions about the role of XMRV in these diseases, how it is spread, what new or existing treatments may help combat the virus, and how treating the virus might improve the health of patients. For access to what we know to date, please see our XMRV Q&A. We will update it regularly and keep you informed.

Whittemore Peterson Institute – XMRV Q & A

We know many of you have been waiting years for answers, accurate diagnoses and some kind of effective treatments. All of us are dedicated to finding these, and we will continue to work as hard and as quickly as possible. Please remain hopeful, and keep in contact with us via the website or email. Making sure we have all of your contact information will ensure we are able to contact you with further information as it becomes available to us.

Angelina Gordon, Whittemore Peterson Institute

Cort Johnson’s site and Blog

XMRV/XAND Info Center Now Up on Phoenix Rising

The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they’d already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases – XAND (X Related Neuroimmune Disorder).

Questions were quickly raised concerning prevalence, transmission, testing, treatment, etc.

Check out the below sections for more information on this startling find. The first page – a very long – contains an overview of what I’ve learned thus far. Much of it, of course, is subject to change.

Immense congratulations and thanks, of course, go to the WPI.

Check out the below sections for more information on this startling find. The first page – a very long – contains an overview of what I’ve learned thus far. Much of it, of course, is subject to change.

Game Changer: the overview: what happened, prevalence, transmission, diagnosis, related research, etc. – http://aboutmecfs.org/Rsrch/XMRV.aspx

Treatment Options- potential treatment optionshttp://aboutmecfs.org/Rsrch/XMRVIntro.aspx

Resource Page- links to articles, blogs, websiteshttp://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Discussion Center- Discuss XMRV/XAND herehttp://forums.aboutmecfs.org/forumdisplay.php?f=54

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Media Round ups for the XMRV story:

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa  (you are here)

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:
http://wp.me/p5foE-28F

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

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