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HHV-6 Virus


This is one of the more current theories concerning ME/CFS & Fibromyalgia (generally ME/CFS).  The first connections between HHV-6 and Chronic Fatigue Syndrom were made as early as 1992.  In 2007, Jose Montoya, MD of Stanford University conducted a small, clinical trial on the effectiveness of the anti-viral drug valganciclovir (Valcyte) in treating Chronic Fatigue Syndrome.  Montoya and many others began to think that ME/CFS and Fibromyalgia were caused by the herpes virus HHV-6 (human herpes virus-6).  Montoya had good results with his study but it was small, with only 25 subjects.

Blood antibody tests are available for HHV-6 but since most people have been exposed to the HHV-6 virus at some point in their lives, many tests are positive but not nessisarily indicative of ME/CFS.  Results can be very ambiguous and ineffective for pinning down a diagnosis.

Currently, suspected HHV-6 infection is treated with Valcyte which is a potentially toxic drug prescribed primarily to treat HIV/AIDS and to prevent cytomegalo virus (CMV) disease in organ transplant patients.  

Studies and trials regarding the treatment of Chronic Fatigue Syndrome with Valcyte are on-going but seem to be loosing steam.  I went to see Dr. Richard Podell in New Jersey after reading about the aforementioned theory on his website (link below), hopeful that he would find this virus and be able to treat me.  After asking him about it during an appointment, he implied that the treatments hadn't been going as well as first expected.  He then recommended I contact Andreas Kogelnik, MD, PHD at Stanford (who was also involved with the Valcyte trials) regarding a new field of study involving B cell depletion.

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Testing to begin for new chronic fatigue therapy 

BY LOUIS BERGERON    

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 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 sustained significant improvement 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 will speak about his efforts at a meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale, Fla., 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 appear 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 of antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe the drug. "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 24 patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness.

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 he was married.

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 a 13½-week period of extreme fatigue, 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 can 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 trial validates the use of the drug in treating some CFS patients, it 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 helped fund 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."

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

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.

                                                                                                               

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 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 sustained significant improvement 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 will speak about his efforts at a meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale, Fla., 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 appear 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 of antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe the drug. "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 24 patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness.

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 he was married.

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 a 13½-week period of extreme fatigue, 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 can 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 trial validates the use of the drug in treating some CFS patients, it 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 helped fund 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."

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

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.                     

Source:  http://news.stanford.edu/news/2007/january10/med-fatigue-011007.html

HHV-6 Foundation


Chronic Fatigue Syndrome

HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood. Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.
Elevated antibody titers can only suggest–not prove–that the virus is active. Short of a tissue biopsy, it may be impossible to find direct evidence of chronic HHV-6 infection. Therefore, physicians who suspect active virus, in a chronic case, must treat based on clinical judgment of the symptoms, using elevated antibodies as one of several “clues”. Infectious disease specialist Jose Montoya, MD from Stanford University did this with 12 patients, treated for long standing fatigue and elevated antibody titers to HHV-6 and EBV. He selected CFS patients who had both elevated titers and symptoms consistent with HHV-6 infection (including cognitive dysfunction) and then treated these patients with a strong antiviral (Valcyte). Nine of the twelve patients improved dramatically, some of whom had been sick for over 10 years (Kogelnik 2006). 
                                                                                                 

Efforts to establish an association between HHV-6 infection and CFS have been complicated by the fact that several studies have been published using tests that don’t differentiate between active and latent HHV-6 infection. Studies that utilized such assays showed no association between HHV-6 and CFS, contradicting the positive studies and creating confusion. However, when assays able to distinguish active and latent infection have been employed (by surveying for specific agents such as IgG “early antigen” antibodies, which are present only during active viral infection), strong disease associations have been observed, suggesting an important role for HHV-6 in CFS.

For example, Ablashi et al found that 57% of CFS patients were positive for IgM early antigen antibodies, compared to only 8% of controls; this group also found that CFS patients had a greater lymphocyte response (Ablashi 2000). Buchwald et al found that 70% of 114 CFS patients were positive for HHV-6 by primary cell culture, as compared to 20% of controls (Buchwald 1992). However, when assays such as qualitative PCR testing on whole blood were used, there was often no significant difference found between patients and controls (Reeves 2000, Wallace 1999). This is because most healthy adults have a small amount of latent HHV-6 DNA in the whole blood.

 

Key Papers: HHV-6 & Chronic Fatigue Syndrome

Komaroff

2006

Is human herpesvirus-6 a trigger for chronic fatigue syndrome?
Chapenko

2006

Activation of human herpesviruses 6 and 7 in patients with chronic fatigue syndrome
Kogelnik

2006

Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue.
Lerner

2001

A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome.
Ablashi

2000

Frequent HHV-6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS) patients.
Patnaik

1995

Prevalence of IgM antibodies to human herpesvirus 6 early antigen (p41/38) in patients with chronic fatigue syndrome.
Buchwald

1992

A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpesvirus type 6 infection.

Source:  http://www.hhv-6foundation.org/associated-conditions/hhv-6-and-chronic-fatigue-syndrome

PubMed Health - Medication Info. on Valganciclovir (Valcyte)

Dr. Richard Podell - Chronic Fatigue Syndrome & HHV-6

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