BEST XMRV CFS LINKS
Best XMRV CFS Links:
Chronic Fatigue Syndrome Research
When it comes to Chronic Fatigue Syndrome Research, you can find some of the very best links to the subject of “XMRV CFS links” right here at the Health Matters Show. That’s because Chronic Fatigue Syndrome (CFS) is one of the illnesses that we cover in depth.
Now… I’m sitting on the sidelines right here with you and waiting anxiously for the back-up proof of the original WPI research study claim that there is a link and causal relationship between XMRV and CFS (Chronic Fatigue Syndrome). As I find links that report on this worldwide pursuit of verification data, I will list them here on this web page. I encourage you to “favorite” it. The most current links will show up first and then so it goes down the page. I intend to post lots of specific, indepth information about XMRV and its tie in with CFS.
Note #1: What I Won’t Do: I won’t be putting up all of the negative data, because I believe the non-verification research studies that have been conducted so far will end up being considered flawed data. If I’m wrong, so be it, but that is my hunch. I suspect various UK researchers are not doing the studies within the specified parameters set and recommended by the WPI (Whittemore Peterson Institute).
Note #2: What You’ll Find: You’ll find the most current news/posts toward the top of this page. What you want to read may not be towards the top, so scroll up and down the page at will. Eventually, there will be lots of data right here. A lot of the posts come directly from this website, if I have blogged about the topic. Any outside links will be embedded in the posts.)
Thank you so much, Cinda Crawford
PS- Send additional data or blog posts that you’d like to see on this page. Send to cinda@getwellhealth.com
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No evidence for XMRV in German CFS and MS patients with fatigue despite the ability of the virus to infect human blood cells in vitro
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XMRV and ME/CFS Update from the Health Matters Show
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News from the front of the war: Cort Johnson
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Science Daily (Oct. 12, 2010) — Xenotropic murine leukemia virus-related virus (XMRV)
*This is a long article highlighting some of the scientists not affiliated with the Whittemore Peterson Institute.
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The Journal of Infectious Diseases 2010;202:000–000
BRIEF REPORT
Timothy J. Henrich, Jonathan Z. Li, Donna Felsenstein, Camille N. Kotton, Robert M. Plenge, Florencia Pereyra, Francisco M. Marty, Nina H. Lin, Paul Grazioso, Danielle M. Crochiere, Daniel Eggers, Daniel R. Kuritzkes, and Athe M. N. Tsibris
Divisions of Infectious Diseases and Allergy, Immunology, and Rheumatology, Brigham and Women’s Hospital, Division of Infectious Diseases, Massachusetts General Hospital, Harvard Medical School, Ragon Institute of Massachusetts General Hospital, Massachusetts Institute of Technology, and Harvard University, Cambridge, and
Dana?Farber Cancer Institute, Boston, Massachusetts
We investigated the prevalence of xenotropic murine leukemia virus?related virus (XMRV) among 293 participants seen at academic hospitals in Boston, Massachusetts. Participants were recruited from the following 5 groups of patients: chronic fatigue syndrome (n=32), human immunodeficiency virus infection (n=43), rheumatoid arthritis
(n=97), hematopoietic stem?cell or solid organ transplant (n=26), or a general cohort of patients presenting for medical care (n=95). XMRV DNA was not detected in any participant samples. We found no association between XMRV and patients with chronic fatigue syndrome or chronic immunomodulatory conditions.
Received 16 May 2010; accepted 2 July 2010; electronically published 11 October 2010.
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The Journal of Infectious Diseases 2010;202:000–000
MAJOR ARTICLE
Bryan P. Danielson,1 Gustavo E. Ayala,2,3 and Jason T. Kimata1
Departments of Molecular Virology and Microbiology and Pathology, and Dan L. Duncan Cancer Center, Baylor College of Medicine, Houston, Texas
Background.There are questions regarding the prevalence of xenotropic murine leukemia virus–related virus (XMRV) in patients with prostate cancer and its association with the RNASEL R462Q polymorphism. We therefore investigated whether XMRV infection could be found in patients with prostate cancer from the southern United States, and we
sought to verify the association with the R462Q.
Methods. Prostate tissue specimens of 144 patients with prostate cancer from the southern United States were genotyped for R462Q by real time polymerase chain reaction allelic discrimination and were screened for XMRV proviral DNA by nested polymerase chain reaction specific for the env gene.
Results. The R462Q polymorphism was found at an allelic frequency of 0.33. XMRV was detected in 32 (22%) of the 144 patients. Patients were significantly more likely to test positive for XMRV in both tumor and normal tissue rather than either alone (k=0.64). A positive result for XMRV was not significantly correlated with the R462Q polymorphism
(P=.82) or clinical pathological parameters of prostate cancer, including Gleason score (P=.29).
Conclusions. XMRV is detectable in normal and tumor prostate tissue from patients with prostate cancer, independent of R462Q. The presence of XMRV in normal tissue suggests that infection may precede cancer onset.
Received 17 February 2010; accepted 29 April 2010; electronically published 11 October 2010
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The Journal of Infectious Diseases 2010;202:000–000
EDITORIAL COMMENTARY
Mary Kearney and Frank Maldarelli
HIV Drug Resistance Program, National Cancer Institute, National Institutes of Health, Bethesda, Maryland
(no abstract available)
XMRV, Solving CFS and Advances in FM: Report From the OFFER 2010 Conference, this is a good wrapup article. Check it out.
New NCBI (of the NIH) report explains a bit of the discrepancy going on. Will it be this simple in the end? http://www.ncbi.nlm.nih.gov/pubmed/20842203
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By way of Rich Van Konynenburg, Ph.D., here’s the newest info on XMRV… .
“Hello all from Dr. Joe Burrascano,
I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV. We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly. Big news that everyone should know and adopt is that we have proposed a name change for the virus.
This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an “endogenous” retrovirus (one that is present in all genomes due to ancient infection).
Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.
We plan to announce this at the upcoming NIH retroviral conference this September.
Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.
Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA”
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New XMRV Research Project granted to Cornell University from NIH (National Institute of Health)
Teleseminar link for XMRV information from CFIDS Assoc of America.
UK Paper Reports the Latest XMRV Controversy Between the NIH and CDC
Blood From a Stone, by Susan D. Vernon, Ph.D. and Scientific Director of the CFIDS Association of America
Further Evident of an XMRV- Chronic Fatigue Syndrome Connection? Check out this Wall Street Journal article.
New Post: XMRV Confirmation: Donating Blood or Not. Check out Dan Moricoli’s note to me and the many implications for this work as implicataed by the CDC and NIH involvement.
Retrovirus XMRV Is Inhibited by Host Proteins and Anti-HIV Drugs AZT, Tenofovir, and Raltegravir. Since XMRV was isolated from the T and B cells of CFS patients, Vinay Pathak and his colleagues in the HIV Drug Resistance Program sought to determine how XMRV was countering intracellular defense mechanisms that inhibit retroviral replication in human cells.
Studies of interactions between HIV-1 and human host proteins have revealed intracellular defense mechanisms that inhibit the replication of a variety of viruses.
From About.com, Adrienne Dellwo reports that researchers are looking again at Ampligen, this time it’s about the possibility that Ampligen may boost NK cell activity in those infected with XMRV. We’ll have to keep our eye on this research.
From the Health Matters Show blog, Dr. Singh and XMRV Ongoing Studies.
Dr. Ila R. Singh and other researchers, such as Dr. Judy Mikovits, are continuing to beat down the door.. that is until they find out the whole story about the relationship between XMRV and ME/CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome). It’s crucial that no stone be left unturned. To put it mildly, this research is very important.
PubMed
Curr Allergy Asthma Rep. 2010 Apr 7. [Epub ahead of print]
Baraniuk JN. Georgetown University, Room 3004-F, 3rd Floor, PHC Building, 3800 Reservoir Road NW, Washington, DC, 20007-2197, USA, baraniuj@georgetown.edu
Xenotropic Murine Leukemia Virus-Related Virus in Chronic Fatigue Syndrome and Prostate Cancer.
…The six strains of XMRV that have been sequenced have greater than 99% identity, indicating a new human infection rather than laboratory contamination.
…XMRV infections could be transmitted to permissive cell lines from CFS plasma, suggesting the potential for communicable and blood-borne spread of the virus and potentially CFS.
XMRV abstracts from Centennial Retrovirus Meeting, Prague, April 29-May 4
Characterization of innate immune responses in Xenotropic Murine Leukemia Retrovirus-Related Virus (XMRV) infected individuals. J. Mikovits1, V. Lombardi1, K. Hagen1, D. Goetz1, M. Marshall2, I. Barao-Silvestre1
1 Whittemore Peterson Institute, Research, Reno, USA
2 University of Nevada, Microbiology and Immunology, Reno, USA
…We hypothesized that NK cells could be a target of infection and that infection of other PBMC cell types could lead to dysfunction of NK cells either directly or indirectly through the upregulation of inflammatory cytokines and chemokines, which are also a hallmark of this disease.
Dr. Teitelbaum’s April 2010 free newsletter is now out. It includes:
XMRV UPDATE
Though European studies have not shown XMRV to be present in repeated studies, this does not mean the case is closed. In the same way I encouraged caution when the report first came out (generating a large amount of angry mail in the blog world), I also now note that XMRV still warrants serious investigation and an open mind. When XMRV was first found in a subset of prostate cancer patients, the association was only found in American, and not European, studies. I simply recommend we give the research time to
unfold. As I noted earlier, while doing the testing themselves, those repeating the WPI study should also send blinded blood samples to the WPI to see if their results match with those patients who have CFS versus those who are healthy, and also match with their independent findings. See: About CFS
The good news? This has begun, with a full blown Federal XMRV study involving 6 different centers, including the WPI. This is discussed in an excellent blog by Cort Johnson, one of Dr. Teitelbaum’s favorite CFS reporters.
Meanwhile, for those following the action, another wonderful blog post also by Cort Johnson discusses new XMRV excitement in a Utah Lab. What I find interesting is the involvement of several researchers I also have a lot of respect for – Drs. Light & Light (a husband/wife team – watch for an upcoming newsletter report on their work) and Dr. Batemen. See another link at AboutCFS.
Meanwhile, a Japanese study found XMRV in 1.7% of the general population and 6.3% of those with prostate cancer. My guess? The XMRV virus is more commonly seen in the U.S. than in Europe, and is one of many triggers in the CFS population. See DiagnoseSupport.
A big push is on to test XMRV and it’s involvement with Chronic Fatigue Syndrome (CFS, CFIDS, ME/CFS). Read more about it and keep some good notes. This could be big!
Whether XMRV turns out to be a major or passenger virus (as the article linked in this post suggests), all of this surely will lead to better information about Chronic Fatigue Syndrome, less speculation as to the cause of CFS, CFIDS and ME/CFS and more concrete results for everyone. That is the goal.
“None of the research and/or clinical criteria for chronic fatigue syndrome published since 1988 have established CFS as a mental disorder and a continuously growing body of literature demonstrates CFS to be a physiological disorder marked by abnormalities in the central and autonomic nervous systems, the immune system and the endocrine system. The role of infectious agents in the onset and/or persistence of CFS has received renewed attention since the DSM-5 revision process began in 1999.
Most recently, the October 2009 report of evidence of a human retrovirus, xenotropic murine leukemia-related retrovirus (XMRV), in CFS patients in Science (Lombardi, 2009) has generated new investigations into this and other infectious agents in CFS.”
Raltegravir: Stopping XMRV Replication
According to new scientific research, Raltegravir Is a Potent Inhibitor of XMRV and may prove useful in stopping XMRV replication. XMRV is the virus implicated in prostate cancer and Chronic Fatigue Syndrome.
Since the information broke that XMRV may be the missing link of information about what causes Chronic Fatigue Syndrome, the CFS world has been in an uproar. Now a body of researchers have put their testing muscles to work studying this anti-retroviral compound called Raltegravir…
“The XMRV retrovirus does not act like HIV.” A recent study indicated that XMRV simply doesn’t have the genes (think software) needed to turn immune cells into XMRV replication factories. Given that it’s not surprising that XMRV levels are very low in immune cells of the blood (PBMC’s) and that it’s very difficult to get XMRV to replicate in them.
When Bad Science & Good Science Battle It Out
Anyone walking this earth and having the slightest interest in Chronic Fatigue Syndrome (CFS), Myalgia Encephalomyelitis (ME) and CFSME has heard the rumblings and is confused about the science battle over whether XMRV exists as any kind of cause of these illnesses.
First we had the great report from the Whittemore Peterson Institute (WPI) that XMRV had been linked with CFS. That’s good. That sounds like we’re moving forward.
Now we have 4 reports from the UK saying there is no link. That’s bad… or is that good? (Hint: it may just be bad science!)
XMRV: Secrets Unfolding Amid Tremendous Controversy
As reported in MedPage on Sunday from work at the Conference on Retrovirus and Opportunisitic infections in San Francisco, current studies about the XMRV, Xenogrophic Murine Leukemia-related Virus, indicate that many secrets about XMRV are unfolding gradually, but that we’re probably only at the beginning of the process.
So far it is not proving to be an easy road confirming a conclusive Chronic Fatigue and XMRV relationship in the latest research, according to the CFIDS Association of America. Most people want to believe that their is some type of viral or retroviral link between XMRV and Chronic Fatigue Syndrome to help legitimize the illness and point to a verifiable cause, but alas, another study provides no such proof.
A study published Feb. 15, 2010 in Retrovirology reports results from XMRV tests using PCR and viral neutralization assays on samples from 170 CFS patients and 395 controls.
XMRV Presentation: Dr. Judy Mikovits, HHV-6 Foundation & ProHealth
…Dr. Judy Mikovitz made a lengthy presentation about XMRV, the suspected new retrovirus and possible causal agent for Chronic Fatigue Syndrome. The HHV-6 Foundation and ProHealth.com sponsored this event. (Find the link on this post.)
Opinion Piece: XMRV Research, Video & More
Most of the time when a person is watching a research drama (like the connection of the XMRV retrovirus and ME/CFS or Chronic Fatigue Syndrome) unfold with opinion (s) and contradicting research on both sides, that person is quiet.
Not so with me any longer, because I’m not sure we’re comparing apples to apples. To begin this discussion, read about this week’s happenings and what we can expect next week. Then let me know what you think about this opinion piece and my “publication” concerns:
Young ME Sufferers: Awareness Action Needed
In an effort to create greater worldwide awareness to ME and CFS young people, I call your attention to an appeal that was listed in Co-Cure Listserve from Jane Colby, Executive Director, The Young ME Sufferers Trust (of the UK), which is affiliated with the Thymes Magazine and the Thymes Trust. In a heartfelt appeal she asks people to forward their unused Christmas cards. Her note goes as follows..
I won’t list the appear hear, but go to the link to read this heart-wrenching story. This young woman is fighting for her life and XMRV may play a very serious role.
Whether you’re searching for information and answers on Fibromyalgia, Chronic Fatigue Syndrome or other chronic health problems, often you can find good health information on the web, if you know where to look and who to pay attention to. That can be a significant fact in your search for meaningful answers.
XMRV and CFS Controversy: Part 2
In establishing a link between the XMRV retrovirus, the proliferation of CFS (Chronic Fatigue Syndrome), and the possible danger to the blood supply network, testing finally has been ordered in the midst of all this controversy. It’s about time! As reported by the CFIDS Association of America:
XMRV and CFS Controversy: Part 1
As reported at the CFIDS Association of America website, Susan D. Vernon, Ph.D., states that the rigor of scientific study into the cause and effect relationship of XMRV and Chronic Fatigue Syndrome (CFS) in the recent UK (United Kingdom) investigation (PLoS One) does not meet the same quality of testing as what has been (and is being) done at WPI, the Whittemore Peterson Institute, in the United States.
She gives specific examples why the PLoS ONE and WPI testing methods differ:
UK News on XMRV from the ME Association
For more news about what is happening in the UK on the subject of XMRV and CFS, Chronic Fatigue Syndrome, ME/CFS and more, check out the link at the ME Association. You’ll find all of their published and up-to-date research articles. You may want to bookmark this page and visit it often (like you do the Health Matters Show!).
Failure to Duplicate XMRV Results
Alas, we knew that there might be a failure to replicate XMRV in Chronic Fatigue Syndrome (CFS) patients, but does this spell the end? I doubt it. Much testing of this sort is necessary to confirm the relationships between XMRV, CFS and ME/CFS. It may be a long time before concrete results are nailed down and we have proven facts. Remember: this hasn’t been a short journey and there’s no reason to think that we’re at the end of the road yet.
Are there links between Cancer and Chronic Fatigue Syndrome?
Many researchers are beginning to wonder about the links between cancer and Chronic Fatigue Syndrome (CFS). I suppose the emphasis of this is being driven by the news in 2009 about XMRV retrovirus. (Suggestion: put XMRV in the search engine box on this website and read more about what’s happening, plus check out a link that I have posted in the middle column titled, “About.com’s XMRV Discovery series.” Each listing contains good information.)
XMRV: CFS Medical Breakthroughs on the Horizon
How long do you think it will take to see medical breakthroughs concerning the new XMRV retrovirus and Chronic Fatigue Syndrome (CFS)? Since we’ve been twenty + years getting to this point, one might think… a long time. But, you could be wrong.
As reported in RGJ.com… .
Raise Awareness: CFSAC Meetings
If you’ve ever wondered how much money is being spent to investigate the cause and cure for Chronic Fatigue Syndrome (CFS, CFIDS), I’m sorry to say it’s not nearly enough. Over twenty years have gone by with some the same people in charge of the information being put out, the research being done and the ongoing influence that the Center for Disease Control (CDC) and National Institute of Health (NIH) are doing I use that word gingerly. The progression of our goals for CFS/ CFIDS is languishing on the sidelines.
Diagnosing CFS: XMRV Test Launch Announced
Many people are eagerly anticipating a definitive test to diagnose Chronic Fatigue Syndrome (CFS). It may finally be here in the form of a diagnostic test that will identify the XMRV retrovirus!
Hear Dr. Dan Peterson Speaking About XMRV & Chronic Fatigue Syndrome
I know that many people want to keep up to date with what is happening about the issue of research, etc., concerning XMRV, a newly implicated retrovirus and Chronic Fatigue Syndrome.
Check out this new resource/event for Chronic Fatigue Syndrome that you can put on your calendar for this Thursday. For many reasons, it should be a great information about XMRV. Dr. Dan Peterson will be providing an hour-long testimony in Washington at the CFSAC meeting on October 29th.
Reviewing: Chronic Denial and Chronic Fatigue Syndrome
An op ed piece by Hillary Johnson published in the NY Times on Tuesday, October 20, 2009, A Case of Chronic Denial, provides up-to-date information about how the XMRV retrovirus may be an integral piece of the puzzle called Chronic Fatigue Syndrome. The piece also recounts some good history of how all of the people who suffer with the illness got to this point in time. It’s quite a harrowing tale.
To learn more about the novel retrovirus named XMRV and how it might affect you if you have Chronic Fatigue Syndrome (CFS), you may want to take a few minutes and review this exciting video from Nevada News, which features Annette Whittemore, president and founder of the Whittemore Peterson Institute and Judy Mikovits, Ph.D., director of research for WPI.
XMRV Retrovirus Extraordinaire: A Few Choice Words by Dr. David S. Bell
My Facebook page has an interesting reply to the news about XMRV and ME/CFS from Dr. David Bell by way of the CFIDS Association of America.
For all you folks who have a Facebook page and we’re not connected yet, go be-friend me. Then click on the link to read what Dr. Bell has to say about this discovery and read all of the replies. It’s easy to see why Dr. David Bell is such a hit with patients and everyone he meets.
New Chronic Fatigue Retrovirus: 7 Things to Keep in Mind About This Ongoing Development
Another link to the newsworthy announcement that I made Friday about scientists finding a possible cause for Chronic Fatigue Syndrome (CFS) and the new retrovirus XMRV can be found in Science News.
Yes, scientists have found a novel retrovirus called gammaretrovirus or XMRV. Here are 7 points to keep in mind as you learn more about it and wait to see if it is declared the official cause of Chronic Fatigue Syndrome or CFS:
Cause of Chronic Fatigue Syndrome Found?
A friend of mine in the health industry sent me notice of the following report that declares that the cause of Chronic Fatigue Syndrome or CFS/ME may have been found. I sat there with my mouth open unable to believe my eyes as I read. After letting the news sink in for a few moments, I believe that we should wait for conclusive proof of such a “one cause” theory. Until that time comes, I’ll keep a doubt or two and wait for science to provide unequivocable proof.
