List of information that comes out of 1'st International XMRV Workshop


Senior Member
East Coast, USA
Similar to the thread I created covering the media coverage of the Dr. Lo/Alter Paper; this thread will try to help group all the media, blog, and other information that comes out of the 1'st annual XMRV conference into one place for easy reference.

Post anything I miss in this thread, I will be updating this constantly.

From Organizers of Conference & Video \ Audio from confrence
Conference program, final
Conference Overview
Q&A Wrap-up Session Webcast 5:15pm EST 9/8
1st International Workshop on XMRV Q A Wrap-up Session on YouTube
Transcript of the 1st International XMRV Workshop Q&A

Dedicated ME-CFS & Neuro-immune Disease Organizations \ Blogs
CFS Central: XMRV Conference, Day 1
CFS Patient Advocate: The REAL second most important day in ME/CFS research
Lannie in the Lymelight: 1st International Workshop on XMRV
Phoenix Rising Blog: Dr. Peterson and ME/CFS Patients Meet with NIH Officials Prior to XMRV Workshop
Phoenix Rising Blog: NIH Steps Up to the Plate - Fauci Picks Pathogen Ace to Lead Major XMRV/CFS Study
Phoenix Rising Forum: Dr. Cheney comments on the XMRV workshop
Phoenix Rising Forum: Dr. de Meirleir's poster at the XMRV Workshop

Specialty Sites: Health \ Magazines \ Other
WebMD: Researchers Study Virus' Link to Chronic Fatigue Syndrome

Mainstream Media
Cleveland Live: Cleveland Clinic researcher helps organize international XMRV meeting
WSJ: ‘World Class Virus Hunter’ To Head Up the Latest XMRV Study (Amy Marcus)


Senior Member
East Coast, USA
Social Networking

Cleveland Clinic twitter, #XMRV hash tag

The CFIDS Association of America
XMRV Global Action

Copy of tweets from Clevland Clinic, Start reading from the bottoms first.
John Coffin: "Until we have a good way to assess the virus, it's premature." #xmrv #mecfs
Wed Sep 08 2010 18:03:30
Q: When are we going to try drugs therapies? #xmrv #mecfs
Wed Sep 08 2010 17:52:44
Jonathan Stoye: "There will be defined assays in a short period of time, around the nucleus of the Blood Working Group." #xmrv #mecfs
Wed Sep 08 2010 17:45:44
The lack of a standard is a theme of the past few days. The Blood Working Group is working to achieve this. #xmrv #mecfs
Wed Sep 08 2010 17:36:21
Question: What are the plans for ensuring researchers test the same ways? #xmrv #mecfs
Wed Sep 08 2010 17:34:30
@bob_cowjuice don't have them, but seems they will be published when the researchers submit the paper shortly.
Wed Sep 08 2010 17:21:47 in reply to bob_cowjuice
@Shhh528 They are reporting the assays used. There have been many and they are not household terms.
Wed Sep 08 2010 17:19:48 in reply to Shhh528
Q&A panel members are Donald Blair, NCI-NIH; John Coffin, Tufts; Jerry Holmberg; US HHS Judy Mikovits, WPI #XMRV #MECFS
Wed Sep 08 2010 17:07:07
Wrap-up Q&A session 5:15 p.m. ET. Webcast: #XMRV #MECFS
Wed Sep 08 2010 17:06:20
Jonas Blomberg from Uppsala University: No evidence for MLV-related viruses in Sweden. #XMRV #MECFS
Wed Sep 08 2010 17:03:04
Bannert: None of the 36 CFS patients or 27 healthy controls tested positive for XMRV. #XMRV #MECFS
Wed Sep 08 2010 16:48:11
Norbert Bannert from Robert Koch-Institut: Based on his sequencing, he could not find XMRV in CFS or ME patients in Germany. #XMRV #MECFS
Wed Sep 08 2010 16:45:29
Kearney: It detects XMRV with great sensitivity & distinguishes background mouse DNA contamination "with 100% accuracy.” #XMRV #MECFS
Wed Sep 08 2010 16:18:21
Mary Kearney from NCI/NIH discussing an assay they've developed and tested. #XMRV #MECFS
Wed Sep 08 2010 16:17:03
Mikovits says her research on UK patients was just unblinded & she’s working on a manuscript for publication w/more details #XMRV #MECFS
Wed Sep 08 2010 14:42:25
More Mikovits: she’s confirmed #XMRV in CFS patients in UK population (previous studies didn’t find the retrovirus in UK patients) #MECFS
Wed Sep 08 2010 14:40:55
Mikovits: "We know this is a hormone-related virus, that's why we see it in younger patients [around puberty]." #XMRV #MECFS
Wed Sep 08 2010 13:14:01
Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses #XMRV #MECFS
Wed Sep 08 2010 13:13:13
Dr. Lo: “All I can say is that we detected it on the first PCR (polymerase chain reaction)." #XMRV #MECFS
Wed Sep 08 2010 13:07:36
Dr. Shyh-Ching Lo from FDA: “Several conditions make the difference in being able to detect the virus in samples.” #XMRV #MECFS
Wed Sep 08 2010 13:06:46
Audience members commenting that the samples in this study involved heperinized blocks; it would impact the ability to detect. #XMRV #MECFS
Wed Sep 08 2010 12:41:43
Huber: "When we sequenced this sample, it was a false positive. In this one cohort, we cannot see XMRV."
Wed Sep 08 2010 12:40:28
Huber: "Out of 111 patients (selected based on CDC criteria), one of the samples was positive for XMRV."
Wed Sep 08 2010 12:40:11
Huber: When we tested our samples, we found a shocking correlation: no CFS samples were XMRV positive &also negative for the 2 mouse probes.
Wed Sep 08 2010 12:39:37
Huber: "We felt compelled to test for mouse contamination. We used a mitochondrial assay to detect mouse DNA."
Wed Sep 08 2010 12:38:29
This time, 2/3 CFS patients were positive, healthy controls had 17/36 positive. Most samples contained multiple viruses. #XMRV #MECFS
Wed Sep 08 2010 12:36:57
Huber: All samples were processed in our lab with a new isolation protocol. #XMRV #MECFS
Wed Sep 08 2010 12:35:53
Last fall, she started to collect new samples, taken in 2009. It’s very few samples (3 CFS and 36 healthy controls). #XMRV #MECFS
Wed Sep 08 2010 12:35:22
Her first cohort, all samples were negative. Her second test found 1 out of 111 samples were positive, using different assays. #XMRV #MECFS
Wed Sep 08 2010 12:34:39
Brigitte Huber of Tufts – her patient samples were taken in 2005 and selected based on the Fukuda/CDC criteria. #XMRV #MECFS
Wed Sep 08 2010 12:33:50
Ruscetti: “This is the last talk I'm going to give on detection. I'm now going to work on pathogenesis." #XMRV #CFS
Wed Sep 08 2010 12:17:40
Ruscetti: "XMRV research is in its infancy; there is no evidence yet for pathogenesis.” #XMRV #CFS
Wed Sep 08 2010 12:16:23
Dr. Frank Ruscetti from NCI: "We identified both polytropic MLV and XMRV in some CFS patient samples."
Wed Sep 08 2010 12:14:51
‘World Class Virus Hunter’ To Head Up the Latest XMRV Study - Health Blog - WSJ #XMRV #MECFS
Wed Sep 08 2010 10:38:05
CFS Central's blog entry on the first day of the #XMRV workshop
Wed Sep 08 2010 10:29:04
Singh taking measures to avoid contamination & ensure consistency; handle only 1 patient sample at a time to avoid contamination #XMRV #CFS
Wed Sep 08 2010 09:40:50
Patient & control samples are processed in identical manner; all samples freshly collected. Other studies haven't done so. #XMRV #CFS
Wed Sep 08 2010 09:38:33
Both patients & controls in Singh's study are from the same geographic area -- will help find minor variations in the virus. #XMRV #CFS
Wed Sep 08 2010 09:37:09
Singh is doing a study w/200 healthy volunteers and 105 #CFS patients. #XMRV
Wed Sep 08 2010 09:36:00
Singh found it interesting that one fourth of #CFS cases from Nevada developed a lymphoma. #XMRV
Wed Sep 08 2010 09:34:22
The amount of #XMRV infection in the prostate can vary based on how deep you look at the tumor tissue, Singh says
Wed Sep 08 2010 09:33:19
Singh: 27% of prostate cancers have XMRV; the higher the Gleason score, the higher the likelihood of finding #XMRV
Wed Sep 08 2010 09:32:28
Singh's lab started studying #XMRV after @ClevelandClinic discovery
Wed Sep 08 2010 09:31:08
Up next at #XMRV workshop: Dr. Ila Singh, Associate Professor, Department of Pathology, University of Utah to address prostate cancer & #CFS
Wed Sep 08 2010 09:30:05
that is noninvasive, rapid, and easy to perform, avoiding the difficulty of obtaining blood or tissue biopsies. #XMRV
Wed Sep 08 2010 09:14:29
Klein: The presence of XMRV RNA in urine is significant because such data can provide the basis for a urine-based #XMRV detection assay …
Wed Sep 08 2010 09:13:52
There is a strong likelihood that there is a family of #XMRV viruses
Wed Sep 08 2010 08:57:02
The technique you use to find #XMRV largely impacts your ability to detect it, thus why there have been conflicting studies, Klein says
Wed Sep 08 2010 08:55:51
Klein: We no longer believe that #XMRV only infects men
Wed Sep 08 2010 08:54:37
Klein: It’s not out of the realm of possibility that prostate cancer could be an infectious disease #XMRV
Wed Sep 08 2010 08:46:53
An estimated 20% of all cancers worldwide are caused by infectious agents & it’s not unlikely that prostate cancer could be as well #XMRV
Wed Sep 08 2010 08:45:14
We need to be able to sort out aggressive vs. non-aggressive prostate cancer, and #XMRV potentially could help do that, Klein says
Wed Sep 08 2010 08:44:08
About 90% of men choose to be treated for prostate cancer, but all therapies have significant side effects, Klein says #XMRV
Wed Sep 08 2010 08:43:42
Klein: Clinicians face the challenge of trying to identify aggressive prostate cancer versus non-aggressive #XMRV
Wed Sep 08 2010 08:42:02
Dr. Eric Klein, chairman of Cleveland Clinic’s urological institute, presenting data on detection of #XMRV in prostatic secretions.
Wed Sep 08 2010 08:37:47
@juneholley thanks. Yes, more updates to come today from the #XMRV workshop.
Wed Sep 08 2010 08:31:42 in reply to juneholley
Cleveland Clinic-led study: Exercise protects against Alzheimer's
Wed Sep 08 2010 08:12:32
Cleveland Clinic researcher helps organize international #XMRV meeting
Wed Sep 08 2010 08:03:24
Here’s link to Web cast for wrap-up Q&A session scheduled for 5:15 p.m. ET Wednesday #XMRV
Tue Sep 07 2010 17:31:02
Much discussion today of prostate cancer and #XMRV -- CFS will be hot topic at workshop tomorrow.
Tue Sep 07 2010 17:27:11
Over 200 people in attendance, including researchers from around the world. #XMRV
Tue Sep 07 2010 16:52:52
Reps from CDC, FDA, NIH/NCI and more are in attendance at #XMRV workshop
Tue Sep 07 2010 16:52:08
#XMRV is associated with prostate cancer and CFS in some, but not all studies
Tue Sep 07 2010 16:32:01
This research suggests that the prostate is an easy place for #XMRV to grow
Tue Sep 07 2010 16:31:09
Silverman: Another factor causing #XMRV to infect the prostate is hormone levels; higher androgen levels correlate to more XMRV infection
Tue Sep 07 2010 16:30:35
Dr. Robert Silverman of @ClevelandClinic discussing findings that suggest how #XMRV might contribute to prostate cancer development.
Tue Sep 07 2010 16:09:51
Much discussion about the possibility of contamination in samples, populations – it’s a very tricky virus to test for. #XMRV
Tue Sep 07 2010 16:07:25
#XMRV is only the third retrovirus known to infect humans.
Tue Sep 07 2010 16:06:10
It raises the question whether protease inhibitors for HIV (antiretroviral drugs) would be effective in treating #XMRV.
Tue Sep 07 2010 16:05:03
From XMRV workshop: We now know what #XMRV looks like – its structure is similar to HIV but it’s in the details where it’s different.
Tue Sep 07 2010 16:04:24
@kdebelic we'll have more updates soon.
Tue Sep 07 2010 15:49:54 in reply to kdebelic
Collins asked participants at #XMRV workshop to ask penetrating questions.
2:59 PM Sep 7th
NIH director Francis S. Collins opened workshop saying this is timely moment to look at possible roles of #XMRV in CFS and prostate cancer.
2:58 PM Sep 7th
An international group of scientists, physicians and epidemiologists is gathered to discuss the #XMRV virus and present research findings.
2:06 PM Sep 7th
Watch here for updates this afternoon from the 1st International Workshop on #XMRV in Bethesda, Md.
2:06 PM Sep 7th