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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Media Links - no discussion


Senior Member
Researchers in Reno find link between retrovirus and neuro-immune disease

"Researchers from the Whittemore Peterson Institute, say XMRV-only the third retrovirus known to affect humans-is found in 95 percent of patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome."

Virus discovery called breakthrough in fight against chronic fatigue syndrome

"In a telephone interview, Mikovits said they had also found antibodies against the virus in 95% of the chronic fatigue syndrome patients. Experts noted that no test was perfect at identifying all cases of an infection, and the antibody tests Mikovits used were being refined."

"My gut feeling is it's not a carrier virus," she said. "It's a human retrovirus, just like HIV, which is why all those other pathogens are not able to be controlled." The close association with chronic fatigue syndrome is important, she added, because "never before has there even been a biomarker in this disease."

Is a Virus the Cause of Fatigue Syndrome?

There is a group who are young, healthy, active and engaged, and all of a sudden they are laid low by something, Dr. Schaffner said. Everyone tells the physicians these are people who are functional and productive, and this is totally out of character. They are frustrated and often quite disheartened. You feel that medical science hasnt caught up with their illness yet.

Chronic fatigue syndrome linked to 'cancer virus'

"Mikovits suspects that XMRV causes CFS. She says her team has found antibodies against XMRV in 95 per cent of the nearly 300 patients they have tested, but these results have yet to published in a journal. Antibodies are a more sensitive test than looking for viral genes, as they pick up people who have had XMRV in the past, not just those who still have it.

What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus."

Retrovirus might be culprit in chronic fatigue syndrome

"Meanwhile, retroviruses harbor pro-growth genes, and some cause the blood cancer leukemia in animals and people. XMRV or xenotropic murine-leukemia-virusrelated virus itself shows up in some men with prostate cancer, particularly those with aggressive malignancies, another research team reported last month in the Proceedings of the National Academy of Sciences."

Gammaretroviruses, a subset of retroviruses, also cause disease in gibbons, cats and koalas, Silverman says. XMRV is the first member of this genus of retrovirus to be found in humans, he notes.

In the new study, the researchers also found hints that the retrovirus is transmitted by blood, as are some other viruses, including HIV. But its probably not spreading very fast, because people with chronic fatigue are too sick to do anything, Mikovits says."

NIH Press Release
Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome

"Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS. It is important to note that retroviruses, like XMRV, are not airborne.

"The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people," said Annette Whittemore, founder and president of WPI and mother of a CFS patient. "Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases."


Senior Member
Media Links continued - no discussion

Emerging retrovirus turns up in new patients

"The form of XMRV now seen in humans can be traced back to a mouse virus, the xenotropic murine leukemia virus (MLV), explain Coffin and Stoye. This is called an endogenous virus because it infects reproductive cells and can therefore be passed on to offspring. Their similarity leaves little doubt that XMRV emerged by cross-species transmission, they say, and this probably happened outside the laboratory.

Both MLV and XMRV belong to the group of gammaretroviruses, notes Takeuchi, which are known to cause cancer, immunological and neurological diseases in animals.

The experts are mystified as to why the virus is coming to light now. Stoye suggests one explanation could be the use of improved methods to identify novel viruses in tissues taken from different sources. [This] reflects a continuing trend over the past 40 years for identifying novel viruses more and more quickly, he notes."

Emerging retrovirus turns up in new patients

"Mikovits and fellow researchers hope that drugs used to treat HIV also can help chronic fatigue patients and are talking with the National Institutes of Health about testing that idea. Scientists also are looking for a kind of lab animal they can infect with XMRV, to see if the virus really causes chronic fatigue syndrome, cancers or other diseases."

WP Institute Update: 95% of ME/CFS Patients Positive for XMRV

"They recently published their groundbreaking findings in the journal Science, one of the worlds leading journals of original scientific research, global news and commentary. The paper, entitled Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients, is a major breakthrough in understanding the origins of this disease.

Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95 percent ME/CFS samples tested positive for XMRV antibodies in the plasma. This finding clearly points to the retrovirus as a significant contributing factor in this illness, said Judy Mikovits, PhD, director of research for WPI and leader of the team that discovered this association."


Senior Member
Retrovirus Linked To Chronic Fatigue Syndrome

"Retroviruses carry their genetic information in RNA rather than DNA, and this is converted to DNA when they invade host cells. Once they invade the host cell they merge their genetic material with the host's and become an integral part of the host's genome for life.Many retroviruses are harmless and even considered "junk" DNA, while others, such as HIV, lead to life-threatening and debilitating diseases like AIDS and can pass onto to the next generation.

"Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95 percent ME/CFS samples tested positive for XMRV antibodies in the plasma."

Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH."

Virus May Play Role In Chronic Fatigue Syndrome

"You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away," said Mikovits during an interview with Reuters.

AIDS drugs such as reverse transcriptase inhibitors and integrase inhibitors, and nonsteroidal anti-inflammatory drugs (NSAIDs) and cancer-fighting proteasome inhibitors could be tested as possible treatments for CFS, she added.

But NCI biochemist Stuart Le Grice, who was involved in the study, said some AIDS drugs might be ineffective against XMRV because many are custom-made to treat HIV.

"But we've learned a lot from HIV, and if XMRV does become a serious issue, we can bring that to bear very quickly," he told Reuters."

Chronic Fatigue Linked To Cancer-Causing Virus

"Researchers have also found people with autism, atypical multiple sclerosis and fibromyalgia to be infected with XMRV."

Fatigue disorder discovery a 'milestone'

Its definitely a milestone in this disease, said Giuseppe Pizzorno, president of research operations at the Nevada Cancer Institute, who said the discovery might have applications in addressing cancer.

Finding a cure for Chronic Fatigue Syndrome was a goal of casino lobbyist and real estate developer Harvey Whittemore and his wife, Annette, when they created the Whittemore Peterson Institute in 2006. Their daughter, now 31, has suffered from the disease since she was 12 and they were not satisfied with the scientific communitys lack of action to combat it, said Annette Whittemore, the institutes founder and president. Doctors told the couple their daughter needed to better manage stress, she said.

The Whittemores are close friends of Larry and Camille Ruvo, founders of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas. The couples, along with Jim and Heather Murren, who are among the founders of Nevada Cancer Institute, are examples of grass-roots philanthropy elevating research and science in Nevada.

Everyone jokes about the poor quality of science and research here in Nevada, Pizzorno said.

With the right people and instruments and support, we can do world-class research.


Senior Member
Media Links - no discussion

Patients, researchers elated with medical discovery in Reno

"Thank you, and thanks to all who shared in this research," Judy Mikovits, Ph.D., read aloud from an email she received from a patient. "I feel like I finally count."

"When you meet these patients, you understand," said Vincent C. Lombardi, Ph.D., a fellow research scientist. "They're not crazy, they're sick. And you feel so bad for them, because everyone says there's nothing wrong with them."

XMRV: Retrovirus Linked to Fibromyalgia & Chronic Fatigue Syndrome

"The retrovirus is called XMRV. To begin understanding this discovery, let's look at a few key definitions.

XMRV stands for:

* Xenotropic
* Murine leukemia virus
* Related
* Virus

So, essentially, it's a virus related to a virus that causes a type of leukemia.

The term xenotropic means: xeno=foreign, tropic=growth. Basically, these viruses don't replicate or cause problems in their original source, but are a problem in other sources. Some species are naturally resistant, but others are not. This particular virus apparently originated in mice."

Virus Linked To Chronic Fatigue Syndrome

"One reason for that suspicion is that many people get the condition after a flu-like illness, says Mikovits. "They get very bad flu-like symptoms and essentially never recover," she says.

Most viruses don't survive long in the body. But retroviruses are one type that lingers. HIV, for example, is a retrovirus that infects people for a lifetime."

'Seabiscuit' Author Hopeful About Chronic Fatigue Syndrome Discovery

"We checked in with writer Laura Hillenbrand, author of the best-seller "Seabiscuit," about the news. Hillenbrand, 42, has struggled with chronic fatigue syndrome since she was 19. Her symptoms, including pain and vertigo, have been so severe that she's only left her house twice in the last two years.

Wow. It's wonderful news. I've had this disease for 23 years. In the first years that I had it there was virtually no research at all, and all of us have desperately needed answers for what is going on in our bodies so this is tremendous news that they've made this progress. I'm very happy to hear it."

Virus Linked to Chronic Fatigue

"At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer."

Virus Is Found in Many With Chronic Fatigue Syndrome

I think this establishes what had always been considered a psychiatric disease as an infectious disease, said Dr. Mikovits, who is research director at the Whittemore Peterson Institute in Reno..."

Dr. William Schaffner, an infectious disease expert at Vanderbilt University, said the discovery was exciting and made sense.

My first reaction is, At last, Dr. Schaffner said. In interacting with patients with chronic fatigue syndrome, you get the distinct impression that theres got to be something there.

He said the illness is intensely frustrating to doctors because it is not understood, there is no effective treatment and many patients are sick for a long time.

He added, This is going to create an avalanche of subsequent studies.


Senior Member
Medi Links - no discussion

Is Autism Associated with A Viral Infection?

"As Dr. Mikovits explained to a television news program in Nevada, "It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won't be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, 'My child was fine and then they got sick, and then they got autism.'"

According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system.

And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."

So there you have it - a possible explanation of regressive autism in a significant number of cases associated with immune system deregulation triggered by vaccination."


Senior Member
Medi Links - no discussion

Virus linked to chronic fatigue syndrome

"It's scary," says Mikovits. "But it's cool. Hopefully this will finally make people change their attitudes to this disease."

Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did.

"It's highly preliminary, but if it's in fact representative, then there are 10 million Americans with this infection, which is very similar to MLV and is now linked to two important diseases," says Coffin."

Scientists may have found cause of ME

"The genetic structure of the XMRV virus indicates it has evolved from a similar virus found in wild field mice. Dr Mikovits suggested it could have jumped the species barrier from mouse to man like many other human viruses, such as HIV, another retrovirus, which is thought to have infected humans from monkeys or apes."

Virus Tied To Chronic Fatigue Syndrome

"MONTAGNE: You now know what is associated with Chronic Fatigue
Syndrome. Does it tell you how someone gets it?

Dr. PETERSON: It's an excellent question, because I think it's required
probably to be a genetic predisposition like there are for most diseases.
And then there has to be the infectious agent and then a combination of
host factors, probably immune factors, et cetera, that propagate the


Senior Member
Hillary Johnson's Website

"A nova has appeared in the constellation. We knew it would appear some day—but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn’t make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn't wait, couldn't hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate."

From Jody, member on this forum
Retrovirus XMRV and Chronic Fatigue Syndrome

"Information on XMRV came to light due to recent research by the Whittemore Peterson Institute for Neuro-Immune Disease, with the National Cancer Institute and the Cleveland Clinic. These scientists found XMRV in the blood of people with CFS. A study involving 330 CFS patients demonstrated XMRV antibodies in more than 95% of this study group's blood samples. Only about 4% of healthy controls had these antibodies.

Currently the hypothesis at the Whittemore Peterson Institute is that XMRV infection of B cells, T cells, Natural Killer cells, and others of the innate immune response, causes chronic inflammation and immune deficiency."

Chronic fatigue `a true human infection,' study says

"You can be infected and be well," she says, adding millions of people likely carry the virus with no ill effects.

Mikovits says the virus may also attack key mechanisms that form red blood cells, the oxygen-bearing workhorses that fuel body tissues."

Peggy Munson's Blog

"The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we can strip the shackles of this government's attempts to squelch, misname, deny, and otherwise ignore our epidemic). News of the ME/XMRV connection has spread around the world like wildfire. Stories have appeared in just about every major media outlet. ME/CFS lists are buzzing. Patients who have written about our lives, screamed about these horrors, fought for medical attention, and died due to medical and social and governmental ignorance and suppression now have our day."


Does a virus cause ME?

Thanks to Marie for posting this on another thread. It is a UK article that offers a synopsis of the Science article in layman's terms by answering questions such as:

  • Where did the story come from?
  • What kind of scientific study was this?
  • What were the results of the study?
  • What interpretations did the researchers draw from these results?
  • What does the NHS Knowledge Service make of this study?


Senior Member
Lyndonville Newsletter October 2009 - Dr. David Bell

[Note: This newsletter is very good and I recommend you read in its entirety.]

"Holy smokes! Just when I want to retire this comes along. How am I going to get any peace and quiet?"

I would think of XMRV as the "puppet-master". It is known to be linked to prostate cancer; it lurks in the shadows and pulls certain strings causing cells to become malignant. Perhaps it pulls another string to cause EBV to be more active, or Lyme, or enterovirus? Another string to alter RNAse L? Many, many questions open up.

But we already know several things. First, ME/CFS is not like your average infection, pneumonia for example. This is a really complicated disease. But AIDS was complicated and now is pretty well figured out. Secondly, we know the clinical aspects of ME/CFS, putting aside the arguments over what definition you use. And the good news: After following patients for twenty years, not many are getting cancer. But there is bad news; cancer takes a long time to get going.

But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do."

Lets revive the Lyndonville research group again (gasp). I would like to test the original Lyndonville kids for XMRV, and if any of you reading this became ill in the Lyndonville area around 1985, were 18 or under at the time, and want to be evaluated, please write to me at lynnews@davidsbell.com. Even if you are feeling great now.


Senior Member
Wikipedia updates XMRV to include Chronic Fatigue Syndrome
Xenotropic murine leukemia virus-related virus

"Xenotropic murine leukemia virus-related virus (XMRV), sometimes shortened to Xenotropic MuLV-related virus, is a recently identified and provisionally named gammaretrovirus which may be involved in the pathology of familial prostate cancer and chronic fatigue syndrome. Its name refers to its similarity to xenotropic murine leukemia viruses, although it does show some substantial differences. It is thought to be linked to both prostate cancer and chronic fatigue syndrome by ribonuclease L (RNase L), part of the cells natural defense against viruses. When activated, RNase L destroys RNA in an effort to halt viral gene expression."


Senior Member
[Note: The UK's NHS published this article about the methodology of the XMRV study.]

Does a virus cause ME?

"The full genetic sequence of the XMRV from two patients who had the viral DNA was then examined, to determine what strain of the virus it was. This strain was compared to the strain previously identified in prostate cancer patients and to a murine leukaemia virus (MLV), often found in laboratories, to discount the possibility that MLV was contaminating the experiments. Tests that looked for proteins from the XMRV virus in the blood cells were also carried out."


Senior Member
Retrovirus linked to chronic fatigue syndrome

"...scientists are worried enough about XMRV that Le Grice led a meeting at the National Institutes of Health last week to plan much more research. The group wants to get a better idea of just how many people carry the germ, how it spreads and what diseases it might cause. In addition to testing more humans, that will probably involve infecting monkeys, rats or other lab animals with XMRV to see if they get sick.

Le Grice and others especially wonder if XMRV might contribute to other cancers. That's partly because of the way retroviruses work. People store their genetic material in DNA and use it to make a messenger molecule called RNA, which gives cells instructions for making proteins. But retroviruses store their genes in RNA, and once they infect a cell use a special protein to make a DNA copy of themselves. That DNA gets inserted into the host's genetic code, where it stays forever.

Only two other types of retroviruses are known to infect people: HIV, the virus that causes AIDS, and HTLV, which can cause blood cancer. It's not known whether people can pass XMRV through sexual contact, as they can HIV and HTLV. The mouse-related virus may have been around for more than 25 years, Le Grice said.

"You're not looking at a spreading infection," he said. "In other words, you're not looking at another HIV yet."


Senior Member
Asheville, NC
American Red Cross

Dear Marian, Thank you for contacting the American Red Cross. While the finding of a retrovirus possibly linked to Chronic Fatigue Syndrome (CFS) is an exciting development, there is no evidence at this point in time that CFS is transmitted by transfusion. Nevertheless, these data will stimulate further research into a possible connection and donor deferral policies will be based on the evidence as it becomes available. Thank you!Sincerely,American Red Cross Public Inquiry

This was the response sent to me via email from contacting the Red Cross. I contacted them as just one more small way to overturn stones and stir the pot, so to speak. As my daughter says, "This could be the new HIV", but I think we all need to be proactive in letting the gov't know we are concerned and we are NOT STUPID!

To addresss the RC response...retroviruses are bloodborne pathogens, Why wouldn't someone get XMRV from a transfusion??????

Ohhhh, today I have a fever....again...for 8 years now! I want to do everything possible from my laptop here in my recliner to find help for us all.


Senior Member
Videos: Interviews w/ Whittemore Peterson Institute (XMRV)

i have posted this on other threads on this board, but think it actually goes here, with the media info, as these are news-maker interviews. but if the board administrators think i have over-posted this on too many threads, please take this off...

* * *

Interviews with Whittemore Peterson Institute on YouTube
here are some *great* YouTube videos of interviews with the major players at WPI: Judy Mikovits, Annette Whittemore (the mom of a PWC) who founded the Whittemore Peterson Institute, WPI Vice President Mike Hillerby, and Dr. Peterson. i'll list the interviews chronologically.

WPI interview from Oct 8, 2009

WPI interview from 2007 (video in part 1 and 2)

WPI interview from Sept 8, 2008

WPI interview from March 2009, i think (part 1 and 2)

this one is also great, also from March 2009, i think

if these clip links don't work, just go to YouTube and search for Whittemore Peterson Institute


Senior Member
Fibromyalgia/Chronic Fatigue Syndrome Retrovirus: Possible Treatment Avenues

"Probably the most famous of all retroviruses is HIV, which causes AIDS. Retroviruses insert their own DNA into your cells, and they're especially hard to get rid of. The scientists who discovered the XMRV link in FMS and ME/CFS are planning to look first at HIV medications in their search for XMRV treatments. They're currently talking to the National Institutes of Health about getting started with tests.

A lot of anti-retrovirals are on the market for HIV, including:

* Atripla
* Combivir
* Emtriva
* Epivir
* Epzicom
* Hivid
* Retrovir
* Trizivir
* Truvada
* Videx
* Viread
* Zerit
* Ziagen

Of course, every drug has its possible side effects. Some of the ones associated with these types of drugs can include flu-like symptoms (ah, the irony!), gastrointestinal problems, insomnia, dizziness, psychological effects, and the list goes on and on. However, the long list of available drugs -- each with somewhat different effects and side effects -- could help you find one that will work for you."


Senior Member
Nancy Klimas Answers Questions on XMRV

[Note: She talks at length about transmission and contrasts to HIV.]

"Here, Dr. Nancy G. Klimas, who serves on the board of directors of the organization, answers questions on the recently discovered retrovirus and clinical care of chronic fatigue syndrome. Dr. Klimas is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center.

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."

Readers Ask: A Virus Linked to Chronic Fatigue Syndrome


Senior Member
From Jody, member on this forum
Retrovirus XMRV and Hope for Chronic Fatigue Syndrome?

"This scenario of chronic infection certainly fits the CFS pattern many experience. We may have periods of improvement, sometimes to a spectacular degree. Then we plummet, often without warning, as apparently the retrovirus flexes its muscles yet again. XMRV makes a complicated mess of the immune system, bringing on bizarre, confusing and seemingly conflicting symptoms to the sufferer."

"I hope the current research heralds an answer for Chronic Fatigue Syndrome. I hope it brings healing for me. But whatever the future holds, I'm thankful to these researchers for bucking political correctness about CFS and treating it like the scourge it is. May this be the beginning of a bright new trend."


Senior Member
Dr. Teitelbaum's Take on XMRV

"A new study shows that a virus related to the AIDS virus, called "XMRV," is present in a high percent of those with CFS and rare in healthy people. Many of you have heard me call CFS the Infection of the Month club, because there are many opportunistic infections present in CFS that are rare in those with a healthy immune system."