XMRV "XAND" CFS with some references to Fibromyalgia
November, 2009 with January 2010 updates
The virus XMRV has been found in a large percent of Chronic Fatigue Syndrome (CFS) patients, though in limited studies which need replication. XMRV is perhaps a significant factor in causing CFS. Yet only correlation, not causation, seems to have been established. If XMRV does turn out to be involved in causing CFS, the name
XAND, for "
X Associated Neuro-immune Disease," seems to be a suggested replacement name for CFS, and perhaps other XMRV-related illnesses.
On October 8, 2009, XMRV made a big splash in CFS circles with online
ScienceXpress publication of the article
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome, written by collaborators from the
Whittemore Peterson Institute (WPI), the
National Cancer Institute, and the
Cleveland Clinic. Dr.
Judy Mikovits, Director of Research at WPI, seems to be the lead spokesperson for the findings. The news about CFS and XMRV has exploded into a flurry of articles and additional research activities.
XMRV is reported to be the fourth known infectious human retrovirus. The third such virus is the widely known HIV, which causes AIDS. Everyone asks: What were the first two? They were HTLV-1 ("Human T-cell Leukemia Virus," which cause T-cell Leukemia and T-cell Lymphoma) and HTLV-2, a variant. XMRV is sometimes called the third such virus, apparently not counting HTLV-2. HIV was initially called HTLV-3, but the label was discarded. A different HTLV-3 and an HTLV-4 have been identified, but apparently do not qualify enough to be counted. People also ask: How does a retrovirus differ from a non-retrovirus? A simplistic answer, probably not nuanced enough for a retrovirus expert, is regular viruses are bits of DNA that stimulate production of RNA, whereas retroviruses are bits of RNA that stimulate production of DNA -- which becomes incorporated into the host's DNA and perhaps can generate more of the RNA retrovirus.
XMRV is an acronym for "
xenotropic murine leukemia virus - related virus." It came from mice ("murine"), but does not affect mice ("xenotropic," or replicating in species other than the original host species). Some articles report XMRV as "recently discovered." While it was was labeled a "new human retrovirus" in October 2008, "Xenotropic Murine Retrovirus" articles exist from the early 1980s. Retrovirus expert Dr.
John Coffin, who has studied such murine viruses since the early 1980s, has been called upon extensively for comments after the newly recognized connection between XMRV and CFS.
Only time will tell if the reported correlation leads to the conclusion XMRV is involved in causation of CFS. Perhaps XMRV only finds a friendly host in CFS patients. If nothing else, XMRV may shed light on the 1980's "cluster outbreaks" of CFS illness in Incline Village, NV, with Drs.
Paul Cheney and
Dan Peterson present, and in Lyndonville, NY, with Dr.
David Bell present. It seems no coincidence this XMRV news brings these doctors to the forefront.
Dozens of links, including text articles, audio pieces, and video segments are categorized below. You might start with the first two Press Releases, check out the Abstract of the first recent scientific article, choose one or more Initial Reaction links, and explore further Comments by Medical Experts. For more in depth information, continue with portions of the October 2009 CFSAC meeting. Links to earlier XMRV or XM retrovirus articles are also available. On this web page, items you might want to view first are marked in
bold burgundy. Then use the categories to hone in on what links you want to click.
So far the studies have mostly focused on CFS, but some Fibromyalgia patients have been tested. Search for "fibro" to find any references to Fibromyalgia.
Fibromyalgia patients as well as CFS patients are sought for further research. If interested in participating in related research studies, there exists this Form for CFS and Fibromyalgia patients to complete for the Whittemore Peterson Institute.
Initial Press Releases:
National Institutes of Health -- overview
1. Whittemore Peterson Institute for Neuro-Immune Disease (Reno, NV); WPI Research Team
2. Cleveland Clinic (Ohio)
3. National Cancer Institute (Bethesda, MD)
Associated Video Interviews:
Dr. Mikovits & Ms. Whittemore, Part 1, -- 10/08/2009; YouTube Video, 7 minutes
Dr. Mikovits & Ms. Whittemore, Part 2, -- 10/08/2009; YouTube Video, 6 minutes
(the above part 2 video comments briefly about Fibromyalgia, 5:00-5:25)
Dr. Mikovits interviewed in lab about XRMV -- 10/12/2009, YouTube Video, 2.5 minutes
(above includes mention at end of Fibromyalgia and Gulf War Syndrome)
WPI XMRV Research Overview -- mentions Fibromyalgia
Abstracts of Underlying Scientific Articles:
(with the articles available for a fee using the left side links):
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with CFS
(Consortium of authors, including Dr. Mikovits, apparently WPI Director of Research)
A New Virus for Old Diseases? (Dr. John Coffin, et. al.)
Initial Reaction by various News Channels:
Note: at some point, all these were available for no fee. Sometimes they change back and forth from being free to being available for a fee.
CFS/Fibromyalgia News Outlets
CFIDS Association of America -- Landmark CFS research reported in Science Magazine
About ME/CFS (Phoenix Rising) -- Game Changer: Retrovirus Found in CFS Patients
This page by Cort Johnson is an entry point to a
large amount of additional resources about XMRV.
ProHealth.com -- WPI Update: 95% of CFS Patients Positive for XMRV Antibodies
(mentions Fibromyalgia in the thrid and tenth paragraphs)
About.com -- XMRV Discovery Series Index
XMRV and Fibromyalgia -- The XMRV Retrovirus & the Fibromyalgia Connection
Scientific News Outlets
Scientific American -- Retrovirus Linked to CFS, Could Aid in Diagnosis
ScienceNews.com -- Retrovirus Might be Culprit in CFS
NewScientist.com -- CFS linked to 'cancer virus'
Mainstream News Outlets:
Wall Street Journal -- Cancer-Causing Virus Linked to Chronic Fatigue
Los Angeles Times -- Virus Discovery called breakthrough in fight against CFS
US News and World Report -- Retrovirus May be at Root of CFS
CBS News (from AP) -- Study Links Virus to CFS
Reuters -- Study isolates virus in chronic fatigue sufferers
BBC News -- ME virus discovery raises hopes
New York Times (Oct 8) -- Virus is Found in Many with CFS
New York TImes (Oct 12, #1) -- Is a Virus the Cause of Fatigue Syndrome?
New York TImes (Oct 12, #2) -- Chronic Fatigue Sufferers Find Vindication in a Virus,
with 245+ comments
New York TImes (Oct 15) -- Readers Ask: A Virus Linked to CFS,
Q/A with Dr. Nancy Klimas, with 65+ comments
ProHealth.com -- comments about Dr. Klimas and the above Q/A article
New York TImes (Oct 20) -- OP-ED: A Case of Chronic Denial,
by Hillary Johnson; Osler's Web author
New York TImes (Nov 11) -- A Big Splash From an Upstart Medical Center
From Oversees:
ME Research, UK -- a great Overview Article about XMRV
Dr. Mikovits talks with an English interviewer -- 10/09/2009, YouTube Video, 3 minutes
Congratulations from Europe
Comments by various Medical Experts:
Dr. David Bell --
October 2009 Lyndonville News -- Initial Reaction
November 2009 Lyndonville News -- Connecting the Dots
Dr. Paul Cheney (with references added)
Dr. Nancy Klimas -- applying good science to XMRV (Video - 5.7 minutes)
Dr. Nancy Klimas -- News interview, 11/13/2009 (YouTube Video - 5.3 minutes)
Dr. Daniel Peterson -- WPI Q/A (reported to have been written by Dr. Peterson)
Dr. Suzanne Vernon -- from the Scientific Director, CFIDS Association of America
Gordon Medical Assoc. -- XMRV Related to CFS
NPR Text Transcripts, with links to audio pieces: (All: "Virus Linked/Tied to CFS")
All Things Considered, with Dr. Coffin, Oct 8 (with 3.5 minute audio link)
Morning Edition, with Dr. Peterson, Oct 9 (with 4.5 minute audio link)
Talk of the Nation, Science Friday -- Abstract to next item...
Talk of the Nation, Science Friday, Oct 16 (text transcript or 10.5 minute audio link)
with Retrovirus expert Dr. John Coffin -- see Virus Tied to Chornic Fatigue Syndrome
CFS Advisory Committee (CFSAC) Meeting -- Oct 29-30, 2009:
CFSAC Explanation --- Oct 2009 Meeting Agenda --- Roster of Members
1st day of CFSAC Meeting; Oct 29 Video (6.75 hours total) -- Real Player in browser
alternate link to whole Oct 29 Video -- brings up Real Player directly
Significant excerpts:
Dr. Daniel Peterson, XMRV Association with CFS, at 1:23:30 to 1:51:40 (28 minutes)
Ms. Whittemore, about XMRV, WPI, and CFS, at 1:57:38 to 2:03:15 (5.5 minutes)
Dr. John Coffin, 40-year retrovirus expert, at 2:04:00 to 2:28:50 (25 minutes)
Dr. Peterson and Dr. Coffin, Q/A session, at 2:28:50 to 3:09:20 (41 minutes)
Alternate Youtube Video Access, with excerpts not so precisely chosen:
Dr. Daniel Peterson: Part 1 (10:18), Part 2 (10:22), Part 3 (10:45)
Ms. Whittemore: Part 4 (10:08),
Dr. John Coffin: Part 5 (10:28), Part 6 (08:11), Part 7 (10:21)
Q/A session: Part 8 (09:59), Part 9 (10:21), Part 10 (09:48), Part 11 (06:16)
2nd day of CFSAC Meeting; Oct 30 Video (5.25 hours total) -- Real Player in browser
alternate to whole Oct 30 Video -- brings up Real Player directly
Significant excerpts:
Dr. Jerry Homeberg, Sr. Advisor for Blood Policy, at 2:00:50 to 2:06:54 (6 minutes)
Q/A session regarding XMRV in the blood supply, at 2:06:54 to 2:21:45 (15 minutes)
Side Topic -- Education of Medical Professionals about CFS:
Dr. Ken Friedman, med schools against CFS education, at 48:48 to 55:00 (6 minutes)
Transcript of Dr. Friedman's comments
Jason and Artman, problem of finding CFS doctors, at 3:33:15 to 3:37:45 (4.5 minutes)
Batman, Klimas, Healy, CFS education resolution, at 3:51:35 to 3:56:30 (5 minutes)
XMRV Test Availability:
Heard Through the Grapevine: Test kit for XMRV to be available from Reno-Based VIP Dx
(Undated) Press Release from WPI regarding XMRV test by VIP Dx
VIP Dx XMRV Test Prodedure and Cost
Cooperative Diagnostice Offers Test for XMRV Virus - By Mail
Web Pages with many Additional Links:
For readers who want to dig further... (Includes repeats of many links already on this page.)
WPI's Set of links
OFFER Utah's set of links
From England's "ME Agenda": (with their "Media Round Ups" 1 to 13)
1: WPI CFS link to retrovirus
2: Science 9 October 2009: WPI CFS to retrovirus
3: WPI CFS retrovirus XMRV in the media
4: XMRV Retrovirus: WPI CFS study
5: Supporting Online Material for XMRV CFS study
6: XMRV Retrovirus: WPI CFS study: Videos and audios
7: XMRV Retrovirus: WPI: CFS
8: XMRV retrovirus study: Position statement from ME Association
9: Notice from Dr David Bell; Article by Paul R. Cheney MD, PhD
10: WPI XMRV retrovirus study link with CFS (Science journal)
11: XMRV Retrovirus WPI CFS study Media Round up 11
12: XMRV Retrovirus Whittemore Peterson CFS study
13: NIH $1.6 Million award for ME/CFS Research for Drs. Mikovits & Kerr
XMRV tests and testing
Historical Perspective papers (about XMRV or XM retrovirus):
Oct 2008, XMRV as "New Human Retrovirus" -- 14 page PDF file
Mar 1981 XM retrovirus -- 6 page PDF file -- just to show XM retrovirus isn't new in the world
Aug 1981 XM retrovirus -- 6 page PDF file -- just to show XM retrovirus isn't new in the world
For more general information about WPI:
Mission Statement plus Additional Details
Dr. Mikovits and Ms. Whittemore -- 03/12/09 about WPI; YouTube Video -- 28 minutes total
Relevant Interview Segments are at 2:45-8:00 and 10:30-16:50.
January 2010 Updates:
CAA overview of initial XMRV findings: Landmark CFS Research reported in Science Magazine
New UK Article: Failure to Detect ... XMRV in CFS
CAA Analysis (explaining UK failure): ... Need for Robust Replication Study
U.S. H.H.S. XMRV Scientific Activities
10/30/09 Stmt of U.S. O.P.H.S. about XMRV and the Blood Supply
Mary Schweitzer's Primer for XMRV and XAND
10/17/09 Dr. Nancy Klimas CFIDS/FMS Lecture
Note: The Rocky Mounatain CFIDS/FMS Association does not dispense medical advice nor recommend or endorse any practice, product, service, test, treatment, or medical hypothesis, and assumes no responsibility for actions undertaken by members or visitors. For medical advice, please consult your doctor.
