Antiretrovirals for CFS?

Discussion in 'Fibromyalgia Main Forum' started by sunnyslumber, Dec 25, 2009.

  1. sunnyslumber

    sunnyslumber New Member

    Hi All,


    Doubtless pretty much everyone here knows about the discovery of XMRV by the Whittemore Peterson Institute. Much of us think that it is quite possible this is the causative agent as a retrovirus targets the immune system and would also explain why chronic fatigue syndrome patients often test postive for a wide variety of infections.

    So I'm wondering, do any of you have doctors that are planning to treat/ (or are treating) your CFS with antiretrovirals or herbal antiretrovirals? I ask because a ton of antiretrovirals have been developed due to HIV and a lot of them would probably carrry out to CFS. Only those that inhibit late stage HIV probably would definately not work. That still leaves a lot of medications.

    So is anyone planning to try a combination of antiretrovirals or a specific one in the future? Trying one now? How is it working out? Will you want to try antiretrovirals, but are waiting for more information? I'd love to hear everybodys views or experiences on this subject.


    Merry Christmas and Happy Holidays,


    john
  2. fight4acure

    fight4acure Member

    Hi! Good question! Are you in the U.S.A. or overseas? Overseas they have an anti-viral medication that AIDS patients take as well, called, oh heck, let me look it up, ... Ampligen, see this website: http://en.wikipedia.org/wiki/Ampligen

    If you're in the U.S.A u r S.O.L. like me. Well, maybe not, as there is a legal way to obtain the medication, that is if you have a real over-seas doctor who will prescribe it to you. I heard from someone though that it's an IV, and that its costs are out of this world.

    I'm currently taking some anti-virals (Valtrex 1,000 mg) that really helped the first five months but after that they haven't been as effective. There are some anti-virals that have been taken. If you look up my initial postings of research studies that I and others posted on my thread, you will see some articles of some U.S. doctors prescribing different kinds of anti-viral meds that have somewhat helped people with FMS and/or CFS, and/or both.

    Let me know if you have any more questions about this, because this is one thing I strongly circle my life around, because I don't really have a life with this illness.

    Merry Christmas!

    I'll bump up the initial thread of research articles, not the 2nd one, but the first one that takes forever to pop up on the screen, or I'll try to copy and paste some helpful info on here for you Hon.

    Hugs!
    Fight :)
    [This Message was Edited on 12/25/2009]
  3. fight4acure

    fight4acure Member

    A lot of stuff me and others collected the past few years on this...

    http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=386443&in_page_id=1774&ICO=HEALTH&ICL=TOPART



    Daily Mail



    Is this the cure for ME? ~~~~~~~~~~~~~~~~~

    By JEROME BURNE, Daily Mail

    Last updated at 11:53am on 16th May 2006

    A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or fatigue syndrome.

    Sufferers who for years had been unable to leave their homes now report being able to resume normal life.

    This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.

    The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

    One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.

    "Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says.

    "I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins."

    However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

    'Soaring energy levels'

    "When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,' says Montoya. "Today, she is functioning at 90 per cent."

    One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

    The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month. While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.

    "I was amazed by the results," says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.

    "I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.

    "I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."

    'Careful monitoring'

    Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

    HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.

    "I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects including anaemia, so you have to monitor patients very carefully. But so far none of the CFS/ ME patients have reacted badly to it."

    All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

    "There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action For ME.

    "About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."

    Montoya agrees: "These were individual cases and it is always possible the results were due to a effect," he says.

    However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement.

    "That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."

    The possibility that valganci-clovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

    For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment.

    Some doctors and health workers believe it is the result of social and psychological factors - and best treated with psychotherapy and exercise.

    Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

    "Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."

    Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

    "We've found that the genes in patients' white blood cells - a key part of the immune system - are switched on and off in an abnormal fashion," he says.

    The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned.

    What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.

    But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system would benefit patients.

    ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------


    (Originally posted by ravenpaige)

    Doctors receive $1M grant for HIV prevention research

    Through the use of gene therapy, researchers are striving to find ways to stop the spread of HIV. Vicky Thomas Issue date: 2/27/07 Section: News The Temple News: An editorially independent student newspaper of Temple University, Philadelpia http://www.temple-news.com/home/index.cfm?event=displayArticle&uStory_id=4fadba12-f959-4083-8e4f-ed507001f59a

    Researchers in the School of Medicine are making progress in the understanding and treatment of two diseases caused by abnormalities in the human antiviral pathway: HIV and Chronic Fatigue Syndrome.

    According to the Centers for Disease Control and Prevention, approximately 40,000 people will be infected with HIV this year in the United States alone. The virus' rapid mutation rate allows it to resist many drug therapies, making it impossible for a vaccine to guard the body against the spread of an infection.

    But the research team, headed by Dr. Robert J. Suhadolnik, a professor of biochemistry in the School of Medicine, is developing a way to immunize against the spread of HIV through the use of gene therapy.

    After 20 years of researching the intracellular immunization approach to inhibit HIV, Suhadolnik's six-member team was recently awarded a $1 million research grant by the National Institutes of Health to continue its work.

    "We have shown now that we can protect the cell from HIV infection in vitro, in the laboratory," Suhadolnik said. Gene therapy immunization, as opposed to vaccines, introduces an antiviral pathway into a patient's genes. The gene replicates and becomes incorporated into the patient's system.

    When the HIV virus is introduced to the body, the gene becomes active and kills the virus.

    "The HIV virus has developed ways to counteract the natural antiviral pathways," said Suhadolnik, adding that this new therapy could stop the spread of HIV because the delivery of antiviral genes to cells would restore the antiviral defense pathways.

    "Gene therapy is extremely interesting because we're using the body's own immune system to combat the virus without outside chemicals or agents," said Sean Roberts, a graduate student in the School of Medicine and a member of the research team. "It's important towards finding a cure. Our primary goal is to find a cure."

    Suhadolnik said the earlier antiviral construct had shortcomings because there was a chance that the modified cell could contain infectious particles.

    "Now we have a self inactivating vector that we can put the antiviral pathway in by way of gene therapy, and the target cells get activated when the virus comes along," said Suhadolnik.

    He also explained that, like a vaccination, the particles would be inactive until infection was introduced.

    "When you get vaccinated, you don't know that those antibodies are present, but when an infectious particle comes in the body, then the antibodies are made and the disease is wiped out," Suhadolnik said.

    Gene therapy has also been successful in curing other immune deficiency diseases, such as Severe Combined Immunodeficiency or "Bubble Boy" disease, which was once considered a fatal condition.The study of antiviral pathways has been the center of Suhadolnik's research program and is also applied to the team's research on CFS, said Nancy Reichenbach, an associate scientist in the School of Medicine and a member of the research team.

    According to Suhadolnik, the cause of CFS is unknown and can occur suddenly with flu-like symptoms and debilitating fatigue.

    The illness, which was once believed to be a psychological disorder connected to depression, is common in women. But Suhadolnik and his research team have found that CFS is not a clinical depression disease, but rather caused by a defect in the antiviral defense pathway.

    While HIV turns off the human antiviral defense mechanism, CFS is a disorder caused when the antiviral pathway is working too hard, making the patient exhausted.

    "Initially we reported that the antiviral pathway was abnormal in patients diagnosed with Chronic Fatigue Syndrome," Suhadolnik said. "In subsequent studies, we reported the appearance of an abnormal protein in the blood cells of the patients diagnosed with CFS.

    "In essence, what we showed was the appearance of a new protein."

    In addition to the grant for their HIV research, Suhadolnik and his team were also granted a U.S. patent for their research and discovery of diagnosis for CFS.
    ----------------------------------------------------------------------------------------------------------------------------------------------------------------------


    New therapy for chronic fatigue syndrome to be tested at Stanford

    STANFORD, Calif. — A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.

    José Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir — an antiviral often used in treating diseases caused by human herpes viruses — to treat a small number of CFS patients.

    The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.

    “This study is small and preliminary, but potentially very important,” said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. “If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness.”

    Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients.

    Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

    Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as “yuppie flu,” since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it’s most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.

    More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely — resulting in chronic, waxing and waning debilitation for years.

    Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years.

    When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya’s patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause.

    Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. “I thought by giving an antiviral that was effective againstherpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes,” said Montoya.

    Within four weeks, the patient’s lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. “We were really shocked by this,” recalled Montoya.

    Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.

    Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.

    During his longest period of extreme fatigue, 13½ weeks, Manson said, “My wife literally thought I was passing away. I could hear the emotion in her voice as she tried to wake me, but I couldn’t wake up to console her. That was just maddening.”

    Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson’s three children, ages 9 to 14, had never seen him healthy.

    Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases. In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral-induced dysfunction of the central nervous system.

    “This could be a solution for a subset of patients, but that subset could be quite large,” said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial. “These viruses have been suspected in CFS for decades, but researchers couldn’t prove it because they are so difficult to detect in the blood. If Montoya’s results are confirmed, he will have made a real breakthrough.”

    “What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on,” Montoya said.

    http://mednews.stanford.edu/releases/2007/january/montoya.html

    ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------


    (Originally Posted by monicaz49)

    http://www.eurekalert.org/pub_releases/2007-01/sumc-ntf010807.php

    New therapy for chronic fatigue syndrome to be tested at Stanford STANFORD, Calif. -- A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.

    José Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir - an antiviral often used in treating diseases caused by human herpes viruses - to treat a small number of CFS patients.

    The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.

    "This study is small and preliminary, but potentially very important," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. "If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness."

    Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients.

    Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

    Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as "yuppie flu," since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it's most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.

    More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely - resulting in chronic, waxing and waning debilitation for years.

    Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years.

    When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya's patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause.

    Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. "I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes," said Montoya.

    Within four weeks, the patient's lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. "We were really shocked by this," recalled Montoya.

    Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.

    Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.

    During his longest period of extreme fatigue, 13 1/2 weeks, Manson said, "My wife literally thought I was passing away. I could hear the emotion in her voice as she tried to wake me, but I couldn't wake up to console her. That was just maddening."

    Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson's three children, ages 9 to 14, had never seen him healthy.

    Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases. In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral-induced dysfunction of the central nervous system.

    "This could be a solution for a subset of patients, but that subset could be quite large," said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial. "These viruses have been suspected in CFS for decades, but researchers couldn't prove it because they are so difficult to detect in the blood. If Montoya's results are confirmed, he will have made a real breakthrough."

    "What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on," Montoya said.

    ### BROADCAST MEDIA CONTACT: M.A. Malone at (650) 723-6912 (mamalone@stanford.edu)

    People interested in participating in the clinical trial must live in the San Francisco Bay Area. More information about the clinical trial is available online at http://www.vicd.info/clinicaltrial.html.

    Stanford University Medical Center integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital at Stanford. For more information, please visit the Web site of the medical center's Office of Communication & Public Affairs at http://mednews.stanford.edu.

    And the contact information if you are interested in participating in the new study is here:

    http://www.vicd. info/clinicaltri al.html

    It's only for people who have high levels of EBV and HHV antibodies.


    -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

    Posted by Lamotta77:

    By JEROME BURNE, Daily Mail 11:33am 16th May 2006

    A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or fatigue syndrome. Sufferers who for years had been unable to leave their homes now report being able to resume normal life.

    This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.

    The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

    One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.

    "Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says.

    "I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins."

    However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

    'Soaring energy levels'

    "When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,' says Montoya. "Today, she is functioning at 90 per cent."

    One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

    The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month. While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.

    "I was amazed by the results," says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.

    "I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.

    "I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."

    'Careful monitoring'

    Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

    HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.

    "I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects including anaemia, so you have to monitor patients very carefully. But so far none of the CFS/ME patients have reacted badly to it."

    All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

    "There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action For ME.

    "About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."

    Montoya agrees: "These were individual cases and it is always possible the results were due to a effect," he says.

    However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement.

    "That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."

    The possibility that valganci-clovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

    For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment.

    Some doctors and health workers believe it is the result of social and psychological factors - and best treated with psychotherapy and exercise.

    Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

    "Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."

    Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

    "We've found that the genes in patients' white blood cells - a key part of the immune system - are switched on and off in an abnormal fashion," he says.

    The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned. What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.

    But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system would benefit patients.

    -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------


    Posted by Lamotta77:

    By Karen Richards who writes the "Your guide to Fibromyalgia & Chronic Fatigue Syndrome" columns for About.com.

    5/28/2006

    Could Valganciclovir Be An Effective Treatment for Chronic Fatigue Syndrome?

    A study testing the effects of the drug valganciclovir on chronic fatigue syndrome patients, nine out of 12 patients reportedly experienced great improvement. The results of this study were reported at a scientific conference in Barcelona by Professor Jose Montoya of Stanford University in California.

    Valganciclovir is a powerful drug used to treat the human herpes virus (HHV-6). Multiple studies over the past few years have shown that a significant percentage of chronic fatigue syndrome patients test positive for HHV-6.

    HHV-6 is most commonly known to cause roseola infantum in children, resulting in a fever and rash. Valganciclovir (brand name, Valcyte) is used to treat viral infections and is FDA approved to treat cytomegalovirus (CMV) retinitis in patients with compromised immune systems.

    According to an article in the London newspaper, Daily Mail, some of the study participants had been suffering for years, unable to leave their homes. Now they say they are able to resume normal lives. One of the study participants featured in the article was Donna Flowers, a physiotherapist and onetime champion figure skater, who lives in California's Silicon Valley. Flowers reported that two years ago she had to spend 14 hours a day in bed, but now, since taking valganciclovir, she is back to working with young Olympic hopefuls.

    Experts agree that a lot more research needs to be done before valganciclovir can be widely used as a treatment for CFS. Much larger, double-blinded placebo controlled studies must be done in order to draw any reliable conclusions. Nevertheless, the results of this one small study are encouraging and may hopefully lead to revealing at least one piece of the CFS puzzle.


    -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

    Indiana Doctor Gives Hope to Fibromyalgia Sufferers ImmuneSupport.com

    09-27-2004

    Local Doctor Gives Hope To Fibromyalgia Sufferers Reporter: Shannon Samson New Media Producer: Kerry Corum

    An Evansville, Indiana physician is going to the American Academy of Pain Management conference in San Antonio Wednesday, to present what could be a breakthrough finding. He suspects the chronic pain of diseases like fibromyalgia could be caused by a series of viruses.

    Anita Held, 64-years-old, needs a basket to hold all the pills she needs to get her through the day. Fibromyalgia leaves her sore all over and constantly tired. She says, "Breathing is an effort, just moving the least little bit is just an effort. So some days I actually will sleep all day long."

    Pain specialist Dr. David Johnson realized the fatigue, aches and chills many of his patients describe are the same symptoms that come with a case of the flu. So he had an idea: What if he tested them for some common viruses? "I went through and listed about three or four viruses, and didn't even know if the labs could test for them, and my gosh, they came back positive."

    He eventually came up with list of 17 viruses and found that his fibromyalgia patients were all testing positive for anywhere from three to nine viruses each. Dr. Johnson believes their immune systems aren't recognizing the viruses as pathogens and as they steal cell material to replicate, the patient is left with a host of ailments. He's prescribing anti-viral medications to try to suppress the viruses, which can take years.

    In the meantime, Johnson says, "I want to get the word out to physicians to test for the virus, use the anti-viral medication and let's all have some input and see if we can eradicate this condition."

    That would be a dream come true for Anita Held, who just found out she has three viruses. "I am glad they found something, because now we have something to work with, is the way I look at it. That's not bad news."

    She says it's good news to think maybe someday she could spend more time with her grandchildren without getting too tired.

    So far, 26 of Dr. Johnson's patients have tested positive for up to nine viruses. He says six are responding well to anti-viral medication.

    Besides fibromyalgia, the treatment is also helping sufferers of chronic fatigue and irritable bowel syndromes.

    Dr. Johnson outlined a list of the viruses he's testing for in fibromyalgia cases:

    *Epstein Barr virus EBV *Cytomegalovirus CMV *Herpes virus: 8 types *Parvovirus B 19 Norwalk agent *Rotavirus *Enteric Coronavirus *Enterovirus Astrovirus Calcivirus *Varicella - Zoster virus VZV Torovirus *Adenovirus Picovirus Pogosta virus Sindbis virus *Coxsackie A and B virus

    *The most frequently involved virses. Most patients will have from three to nine of these viruses at abnormal levels.

    For more information on Dr. Johnson's research, contact his office in Indiana at 812-425-2662.

    Source: All content © Copyright 2000 - 2004 WorldNow and WFIE. All Rights Reserved. The original article is posted at: http://www.14wfie.com/Global/story.asp?S=2271049&nav=3w6rQvkD

    -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

    Hope these are helpful! If you learn of anything else, please post it, as I've been out of the loop of gathering info for almost a year, so I have mostly old stuff, minus the recent info I and others just collected about XMRV the last few days.

    Hugs!
    Fight4acure!
    Fight2Educate! :)
    [This Message was Edited on 12/25/2009]
  4. ladybugmandy

    ladybugmandy Member

    hi john,

    i am awaiting my XMRV results and if i am lucky enough to test positive, an infectious disease doctor i have found has tentatively agreed to presribe AZT for me. i plan to take 500 mg a day.

    i have run into only one person online who claims to have been helped by AZT but i was unable to secure an email address for her so i do not have many details about her case.

    i believe isentress (an HIV drug) as well as another soon-to-be approved HIV drug may inhibit XMRV replication also.

    sue
  5. fight4acure

    fight4acure Member

    Thanks for mentioning this, because I'm wondering too if my doc would prescribe a new anti-viral.

    My doc told me earlier this month, guess what? what? there's a virus active in people with CFS. Then later he tells me he's getting me a prescription for a new anti-depressant???? I guess that will help, LOL, NOT!!!! I guess he left his brains at home that day.

    I didn't know what AZT is, so I wanted to post this upon just looking it up online:

    http://en.wikipedia.org/wiki/Zidovudine

    http://www.rxlist.com/isentress-drug.htm

    Thank you for the mention of the two meds. I'll ask my doc the next time I see him if he can try me on a different anti-viral, instead of a different anti-depressant.

    Love,
    Fight :)
  6. ladybugmandy

    ladybugmandy Member

    fight...i cannot remember - are u in the UK? if not, try to see if u can get tested for xmrv...it would be much easier to convince a doc to try an antiretroviral if you have a positive test.

    sue:)
  7. fight4acure

    fight4acure Member

    I'm in the U.S.A., Wisconsin. Does America have testing available, or is it only in the European countries? Could I have my doctor send my blood work to Europe if there is no test in the U.S.A.? What are my options??? Maybe they'll have tests here in the U.S. soon, or do they have tests already?

    Thanks,
    Fight :)
  8. ladybugmandy

    ladybugmandy Member

    fight..the test is available right now only in north america at VIP Dx in Nevada. you have to call them and request an XMRV test kit. they are very busy now so you will have to wait a while for them to mail it to you. once you have it, you need to have your blood drawn and one tube has to be centrifuged. then send the kit back in the envelope they provide for overnight delivery and wait 3-6 weeks for the results to be faxed to your doctor.

    the PCR and culture tests together cost $650. when the test is standardized and FDA approved, insurance will cover the cost but right now, i think you may have to pay out-of-pocket.

    if you would like to wait for the antibody test, i think it will be available in a few months. if you can wait, i would, because the test right now is very new and may not have a high degree of accuracy.

    sue
  9. znewby

    znewby Member

    Do you find that your symptoms are much worse in the winter?

    It'll be interesting to see the %ages of people who test positive after getting cfs following mono.
  10. Svette_Palme

    Svette_Palme New Member

    About symptoms being worse in winter - uh huh!!

    That is a definate yes. Much worse, night and day.

    Muscle cramps and neurological pains like burning skin feelings, plus IBS is worse, everything is worse in winter. I can barely walk around the block now, and in summer I was riding a bike for an hour or more at times.

    Vit D? I take 1600 units a day, but maybe supplements are not a perfect subsitute.

    Antivirals? - not until there is more evidence.
  11. znewby

    znewby Member

    But maybe the main problem is thyroid and not so much vit d. I thought that people who are hypothyroid sometimes have pain in the winter. I don't think weather affects retroviruses because I have never heard any difference at all in the health of people who have HIV.
  12. ladybugmandy

    ladybugmandy Member

    hello. i used to notice a change for the better in the summer but now, i am just very sick all the time and don't notice much change.

    if it's a retrovirus, it would cause some damage to a lot of organs including the thyroid....my thyroid showed colloid cysts, which can develop after long-term, untreated viral infection.


    sue
  13. hensue

    hensue New Member

    Hey
    Have you sent your test off to VIP? Or have you gottent the test yet?
    xand here

    thanks
    MERRY CHRISTMAS AND HAPPY HEALTHY NEW YEAR
  14. ladybugmandy

    ladybugmandy Member

    thank you, hon. merry christmas and happy and healthy new year to you, too:)

    they said my results should be here by the end of this week and my doctor's appt. is jan 5....

    i am so tired of this suffering....:(

    have you decided what your next step will be? do you have a good doctor? you have probably told us all this before but my memory is non existent lol

    love u
    sue
  15. fight4acure

    fight4acure Member

    Thanks, you answered many of my questions, 1) where is it available, 2) how much, 3) proceedures, & 4) accuracy of the test. Plus you answered another question I had, which is, when are they going to have an easier test.

    Thanks, You've been great help! I will talk to my doc about the testing with the more accurate test, and until then try to be a guinnea pig, asking him to try out one of the available AIDS (anti-viral) medicines, here in the U.S.

    Love,
    Fight :)
    [This Message was Edited on 12/27/2009]
  16. ladybugmandy

    ladybugmandy Member

    fight....not all of the aids meds will work. so far, only AZT has been shown to help in the lab, and isentress is said to work but this has not been published yet.

    azt can cause mitochondrial damage which can be serious and isentress can cause autoimmunity.

    azt is a very old drug that has been studied a lot and that is why i am planning on trying that one first.

    love
    sue
  17. fight4acure

    fight4acure Member

    Sounds like quite a risk. No wonder why doctors want to see evidence first, to approve it in the U.S.A.

    Ampligen was made in 1970s. http://en.wikipedia.org/wiki/Ampligen
    That's as old as me. Is Ampligen less risky than AZT?

    Love,
    Fight :)
  18. ladybugmandy

    ladybugmandy Member

    i think ampligen might be less risky....i don't know if anyone has died because of ampligen but many have died because of azt!

    azt is being used in lower doses now, though...
  19. sunnyslumber

    sunnyslumber New Member

    Hi fight4acure, ladybugmandy, hensue, znwewby, Svette_Palme,

    Thanks to fight4acure for providing all of that information!

    Thanks all you guys for making this a great thread, I hope you all are having great holidays but even if you are alone try to remember that it won't be that way forever, that you are loved, or will be loved, since no one who loves can ever love in vain.

    I really am interested in the new HIV drug you mentioned, since if that could help for XMRV that would be great. It's true we should be quite cautious generalizing from the HIV antiretrovirals since the two viruses obviously aren't the same and only share the same mode of action in attacking cells (though, for viruses, that is a BIG similarity). A lot of the HIV drugs might not work, but those that target enzymes/proteins common to all retroviruses such as integrase and reverse-transcriptase you would expect could quite possibly have some activity. AZT has a lot of adverse side-effects from what I've read, so please use it cautiously guys.

    Also hopefully ampligen will be approved here in the U.S. in the next few months (it was rejected in early Dec I think). It is not an anti-viral per se, but an immune modulator (though most/all of you probably already know that).

    Regarding the Whittemore Peterson Testing kits, yea definitely if you guys can get it approved by your insurance I'd advise you to try and obtain their kit. Not only could we learn a major something by getting tested, but also (I think?) some of that money must be being channeled back to their CFS research. So if you can get it covered its a win win! =)

    Lastly, something I have to tell myself all the time, whenever I fall short (all the time hehe, or at least 95% of the time) you're not a failure, you're a very courageous person, hold your head up high! (figuratively at least =) ). I think the same for all the people here. (sorry this has 0 relevance to the thread but just felt like I should say it)

    Happy Holidays and New Year,

    TK all

  20. fight4acure

    fight4acure Member

    Thanks for being a good friend to chat with about all of this confusion regarding treatments!

    Hugs!
    Fight :)