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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Cort

    Cort Phoenix Rising Founder


    Prevalence - XMRV virus found in approximately 2/3 of ME/CFS patients in locations across the US. Dr. Mikovits sites unpublished evidence suggesting that that percentage could be much higher.

    Two Diseases - XMRV is found in high levels in two diseases; aggressive forms of prostate cancer and ME/CFS. Both have defects in the RNase L enzyme that controls the interferon immune response.

  2. Cort

    Cort Phoenix Rising Founder

    WPI Question and Answer on XMRV

    Q and A from the WPI website http://wpinstitute.org/xmrv/xmrv_qa.html

    What is XMRV?

    Researchers at the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic, have recently discovered the presence of a retrovirus in blood samples from patients diagnosed with chronic ME/ CFS. The human retrovirus, identified as XMRV, has now been found to be in over 95 percent of the patients’ blood samples in this study group.

    XMRV is a human retrovirus and is similar to HIV and HTLV-1. It was first identified by Dr. Robert Silverman, in prostate cancer tissue of men with a specific genetic defect in their antiviral defense pathway. Prior to the Whittemore Peterson Institute study, XMRV had not been isolated from a human diseased population or been shown to be infectious and transmissible.

    What is the link between XMRV and ME/CFS, fibromyalgia and other neuro-immune diseases?

    Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases.

    A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.

    How is XMRV transmitted?

    XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses.

    What does it mean if I am infected with XMRV?

    In other studies XMRV has been detected in very aggressive cancerous prostate tumors. We do not know all of the health ramifications of XMRV or ME/CFS, but we do know that some people with ME/CFS, have on average a lower life expectancy than someone without this chronic disease. One may have XMRV and not have ME/CFS as evidenced by positive results of 3.7 percent of our control samples.

    Why was XMRV looked for in neuro-immune diseases?

    Patients who have been diagnosed with ME/CFS have been shown to have a unique immune deficiency in a part of their antiviral system called the RNase L pathway. This pathway was also deficient in men whose cancer samples were first used in the discovery of XMRV. In this study, however, Whittemore Peterson Institute researchers have found XMRV in patients without an RNase L pathway deficiency. It is not known if XMRV causes this deficiency or if patients with this deficiency are more susceptible to the virus’ effects or both.

    Where did the Whittemore Peterson Institute get the blood samples used for this study?

    The blood samples used in this historic study were collected from several different regions within the United States and included both a known ME/CFS population and a control group. Of those diagnosed with ME/CFS, over 95 percent have recently been found to have antibodies to XMRV in their blood.

    Can you catch ME/CFS?

    Causation of ME/CFS is likely to be a multi-factorial process which occurs in a susceptible person with common viral co-infections. Chronic fatigue syndrome (ME/CFS) is a complex, systemic neuro-immune disease that is estimated to affect over one million Americans and 17 million people worldwide. ME/CFS has traditionally been diagnosed by the exclusion of other similarly presenting conditions, such as MS and lupus, and by a series of symptoms; making the diagnosis an expensive and difficult process. Until now, a single viral link (while suspected by many) had not been made because so many common viruses have been found to be reactivated in persons with ME/CFS. This finding suggests a role for XMRV in the pathogenesis of ME/CFS and creates a better understanding of the disease. Our work suggests but does not prove that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

    If I am pregnant or thinking about getting pregnant and have ME/CFS, should I be concerned about protecting my unborn child?

    As a ME/CFS patient who is either pregnant or thinking about getting pregnant, you should speak with your physician regarding XMRV and safety measures you can use to minimize transmission of this virus to your child.

    What can my doctor do for me if I test positive to the XMRV virus?

    Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. Obviously, only begin any therapies approved by your physician.

    Who discovered XMRV?

    XMRV was originally discovered in prostate cancer tumors by Dr. Robert Silverman. Scientists from the Whittemore Peterson Institute, Cleveland Clinic and the National Cancer Institute were the first to discover XMRV in the blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

    How many retroviruses are there?

    Currently there are only three known infectious human retroviruses; HIV, HTLV-1 and 2 and now XMRV. HIV causes AIDS and HTLV-1 and 2 causes T-cell leukemia and T-cell lymphoma. XMRV is the most recent retrovirus discovered to infect humans and has been linked to neurological disease and prostate cancer.

    I have been diagnosed with ME/CFS and recently tested positive for XMRV. My friends and family ask that if I am sick and have a retrovirus, why do I look normal?

    Like other retroviruses known to infect humans, these illnesses appear to be invisible to the untrained eye. A physician, however, can see the signs of illness, and still must carefully examine the patient to know for certain who is ill and with what disease. Many diseases fall into this category. Unless one develops a disease that creates physical lesions that people can see e.g. psoriasis, the mask of lupus or the crippling bone changes of arthritis, most people can not see how debilitating the illness actually is. In addition, each person responds differently to treatment and therefore can maintain a higher quality of health and appearance of health. In the case of HIV, many people are infected but do not appear to be ill.

    Most thought ME/CFS was a woman’s disease. But XMRV has been found in men with prostate cancer and now people with ME/CFS. What does this say about ME/CFS?

    ME/CFS is not a woman’s disease. In fact the epidemiological study done by Dr. Lenny Jason has shown that this disease occurs in men and women and is also prevalent in children. Instances of outbreaks in which entire families and groups of friends became ill near the same time, have been reported across the US, the UK and other countries.

    Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease?

    Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.

    Is XMRV only in the United States or is it elsewhere?

    For the purposes of this study, samples were collected from many different areas within the United States. However, as with other retroviruses, there is no reason to believe that the virus is not present in all other parts of the world.
  3. richvank

    richvank Senior Member

    Possible link to low Red blood cell oxygen levels - a protein associated with the virus can coat red blood cells possibly leading to low red blood cell oxygen levels

    Dr. Reeves - the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". The CDC is however trying to replicate these findings.

    Prevalence - "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," - this is going to get a lot of study. The NIH has already convened a conference about how to go about determining how prevalent this virus is and how much illness it causes.

  4. MEKoan

    MEKoan Senior Member

  5. richvank

    richvank Senior Member

    THis sent a chill up my spine: "NCI is responding like it did in the early days of HIV,[/B]" says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.

    OCTOBER 8, 2009, 3:12 P.M. ET
    Retrovirus Linked to Chronic-Fatigue Syndrome By AMY DOCKSER MARCUS

    Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.

    An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, a devastating condition about which there is little medical consensus. CFS is characterized by debilitating fatigue and chronic pain, among other symptoms, but diagnosis is generally made by ruling out other diseases, and there are no specific treatments.

    Many patients say they are told by doctors that their problems are psychological, so a study showing a strong association between a virus and CFS is likely to change the field.

    But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS. Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV. If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.

    The study was done by researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the Cleveland Clinic.

    In September, researchers at the University of Utah and Columbia University Medical Center found XMRV in 27% of the prostate-cancer samples they examined. That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.

    Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. "NCI is responding like it did in the early days of HIV," says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.

    Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.

    So far, XMRV, known fully as xenotropic murine leukemia virus-related virus, doesn't appear to replicate as quickly as HIV does. Scientists also don't know how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.

    Dr. Le Grice of the NCI said the highest priority now was to quickly develop a validated blood test or other assay that could be used in doctors' offices to determine who has XMRV. At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue. "A large effort is under way to answer all these questions," he said. "I do not want this to be cause for panic."

    Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong possibility. Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control. "Just like you cannot have AIDS without HIV, I believe you won't be able to find a case of chronic-fatigue syndrome without XMRV," Dr. Mikovits said.

    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. NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.

    The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.

    Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus." Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.

    The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease.

    At their home in Reno, the Whittemores' daughter, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.

    Ms. Whittemore-Goad says she was a regular school girl, playing sports and involved in school activities, until the age of 10, when she became ill with a monolike virus that she couldn't shake. She said doctors first told her parents that the illness was psychological, that she had school phobia and was under stress from her parents. "We kept searching for an answer," says Ms. Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.

    Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.

    Sitting on the couch next to her husband, whom she married six months ago after meeting, Ms. Whittemore-Goad says the news that she is infected with XMRV "made everything that has happened to me make sense." Brian Goad, her husband, said he felt relieved knowing "now we can find a way to treat and hopefully cure it." For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.

    Write to Amy Dockser Marcus at amy.marcus@wsj.com
  6. jenbooks

    jenbooks Guest


    I wonder if ticks could be tested for this retrovirus. Simply because a murine retrovirus jumping species sounds a little odd to me. However ticks feed on field mice as often as deer and other mammals like *humans*. And it's blood borne. Therefore conceivably the virus could adapt i.e. jump. (Not that viruses can't jump otherwise but it isn't all that common). I think someone should encourage Eva Sapi PhD to test for this (I guess I will :D).

    I do know that science works with murine retroviruses. For instance it has been used in gene therapy--a modified murine leukemia virus. Perhaps it has been used in other fields that I don't know about.
  7. Cort

    Cort Phoenix Rising Founder

    Contagious:Given that infectious virus is present in plasma and blood cells, blood-borne transmission is a possibility,” write Coffin and Stoye.

    RNase L - RNase L dysfunction is an old finding in ME/CFS. ]. It was recently found to be a problem in prostate cancer as well. - Both conditions are associated with dysfunction of [the antiviral enzyme] RnaseL, which is an important element of intracellular anti-viral immunity,”

    Genetic Match to the Virus Associated with Prostrate cancer -


  8. MEKoan

    MEKoan Senior Member

    Reeves in Nature

    "William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS"."

    It's not only really real, it's really most sincerely real!

    Who knew!?

    We did!

  9. Cort

    Cort Phoenix Rising Founder



    Study isolates virus in chronic fatigue sufferers

    Thu Oct 8, 2009 2:00pm EDT

    * Virus found in 67 percent of chronic fatigue patients

    * Findings show link to CSF, not proof of causation

    * Discovery a major step toward treatment options

    By David Morgan

    WASHINGTON, Oct 8 (Reuters) - A virus linked to prostate cancer also appears to play a role in chronic fatigue syndrome, according to research that could lead to the first drug treatments for a mysterious disorder that affects 17 million people worldwide.

    Researchers found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients. The same virus showed up in only 8 of 218 healthy people, they reported on Thursday in the journal Science.

    Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatigue syndrome, or CFS, and does not prove that the pathogen causes the disorder.

    Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.

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

    She said AIDS drugs such as non-nucleoside reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.

    Takeda Pharmaceutical Co Ltd (4502.T: Quote, Profile, Research, Stock Buzz) makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.


    CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention. Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats.

    Symptoms last at least six months and can be as disabling as multiple sclerosis or rheumatoid arthritis, the CDC said.

    But Mikovits said there is currently no treatment for CFS aside from cognitive behavioral therapy to help patients cope with the disorder's crippling effects.

    The XMRV virus is a retrovirus, like the HIV virus that causes AIDS. As with all viruses, a retrovirus copies its genetic code into the DNA of its host but uses RNA -- a working form of DNA -- instead of using DNA to do so.

    Known formally as xenotropic murine leukemia virus-related virus, XMRV has also been found in some prostate tumors and is also known to cause leukemia and tumors in animals. [ID:nN07209255]

    Mikovits' team said further research must now determine whether XMRV directly causes CFS, is just a passenger virus in the suppressed immune systems of sufferers or a pathogen that acts in concert with other viruses that have been implicated in the disorder by previous research.

    "Conceivably these viruses could be co-factors in pathogenesis, as is the case for HIV-mediated disease, where co-infecting pathogens play an important role," the report said.

    Because 3.7 percent of the healthy test population tested positive for XMRV, the researchers said several million otherwise healthy people in the United States could be infected with it. (Editing by Maggie Fox and Vicki Allen)
  10. MEKoan

    MEKoan Senior Member


    CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention. Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats."

    Pinch me, I'm dreaming!

  11. Cort

    Cort Phoenix Rising Founder



    Why it persists while other viruses don't. Most people apparently did get over infections but retroviral infections are a different story - "Retroviruses in general give rise to infections that persist indefinitely," says Coffin. Most other viruses are eliminated from the body.

    Confident Researchers! - The whole enchilada! - In people, XMRV could explain "the entire spectrum of symptoms that have come to be known as chronic fatigue syndrome," - Dr. Judy Mikovits

    The Face of Chronic Fatigue Syndrome - Annette Whittemore, one of the founders of the Whittemore Peterson Institute. "We've always known there was something out there. Now we see its face," she says.

    WPI Testing Treatments - WPI will start testing the efficacy of retroviral drugs in ME/CFS soon

  12. Cort

    Cort Phoenix Rising Founder

    Scientific American


    "Changing the landscape for diagnosis and possible treatment" - everything just changed!

    Not just the Incline Village cohort- the WPI looked at cases all over the US. That's really big - it almost sounds like its been replicated already - since they've tested it so widely. "We found the virus in the same proportion in every outbreak,"

    May be able to induce to induce the reactivation of viruses - possibly even viruses found in our DNA -
    "This new retrovirus may be able, through infecting human cells, [to] induce a transcription of an endogenous virus,"

    Already testing in animals to understand the virus - Animal model testing is already underway

    Treatment - Mikovits notes that her team is looking into some reverse transcriptase inhibitors that have already been approved by the U.S. Food and Drug Administration for other uses.

  13. Mary

    Mary Moderator

    Southern California
    Thanks for all the info

    but I don't know whether to be sad or glad about this news. I had been pinning my hopes on getting my methylation cycle jumpstarted, have made small improvements, so the idea of having to deal with a retrovirus and all that entails (antivirals etc. which I can't tolerate) is actually rather discouraging to me.

    Yes, it's good to have biomarker etc., so we'll be taken seriously, but what a biomarker! I'd rather it was something else ...

  14. Dolphin

    Dolphin Senior Member

    Thanks Rich.

    CFS is much more like a chronic viral disease than most chronic diseases, in case WCR didn't notice!

    If they use the "empirical" definition, they won't replicate it. :(
  15. Frickly

    Frickly Senior Member

    It's a good day...

    However, I do have to agree with Mary above. Does this mean we will never get better? Will there never be a cure? Will we all die early from different diseases because of our weakened immune system? Have I given this virus to my kids? My husband?

    Sorry to be a downer as I am very excited about this news but have mixed feelings about it's implications.
  16. Dolphin

    Dolphin Senior Member

    In some ways, nothing has changed from yesterday. The vast vast majority of young children of people with the illness I see are healthy. Similarly with partners.

    People aren't going to die any earlier than they were yesterday. It doesn't mean people have AIDS.
  17. Kati

    Kati Patient in training

    If 2/3 of CFS test positive for the virus, well what about the rest of them ? Does that mean they don't have the disease? Or perhaps they haven't found the virus but it's there- or latent-

    It's wonderful news for the ME/CFS community, but I wonder how long it will take till everyone in the communities get tested and treated-

    Another question I have is the virus is known to cause an aggressive type of prostate cancer- how about women? I guess we get ME/CFS- but is it associated with other types of maligancies?

    So much more to be discovered- I hope that we get access to all the retroviral medications soon and also that we get recognition from CDC and especially insurance companies.

    Now it makes me think why so many nurses get sick with CFIDS- I have had a few needlestick injuries in my carreer, saliva contact and blood droplets in the eyes. That would qualify me for WCB- in theory.
  18. _Kim_

    _Kim_ Guest

    Thanks to Cort and others for the news

    Yet, I agree with Mary and Fickly. The news is not something to be so thrilled about on a personal level. There is a sick feeling in the pit of my stomach. Not only for my own future, but for those that I may have unknowingly infected. I thought I was being careful and responsible by getting tested for HIV before having unprotected sex with my boyfriend.
  19. Kati

    Kati Patient in training

    It means that instead of being labelled as a psychosomatic disease, we now have a potential cause for this disease, and potentially many posible treatments.It also means that the governments hopefully will release the purse strings for more research on CFIDS, and more researchers will be interested by this discovery.

    Indeed we will likely be the same tomorrow- still in bed, and dizzy and short of breath, sore throat etc... But we are better off knowing what we are dealing with then being left in the dark (no pun intended) and marginalized by the society. This is about social recognition, validation and treatments of more of us.

    If we have a virus resembling HIV, I have to say that many out there live a very normal life, with control of the disease by medication, but they can work, walk, run, travel, and enjoy life.

    Thank you W-P institute. Keep up the wonderful work.

  20. InvertedTree

    InvertedTree Senior Member

    Thanks for the information Cort

    I know that doctors' who work with HIV patients have been able to suppress the HIV virus with the use of anti retro-viral medications making it virutally undetectable.

    I wonder if the same medications can suppress this virus?

    It's interesting because my primary care doctor is also an HIV doctor. He doesn't believe in CFS but thought that my symptoms were due to some sort of retrovirus.

    I'm going to download the article and bring it to him and see if he'd be willing to try some of the anti retro viral meds.

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