New Study on Potential Cure for CFIDS

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Loopy Pig
New Member


Date Joined Aug 2003
Total Posts : 17
   Posted 1/14/2007 1:49 PM (GMT -7)   
http://mednews.stanford.edu/releases/2007/january/montoya.html

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.

People interested in participating in the clinical trial must live in the San
Francisco Bay

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/15/2007 7:30 AM (GMT -7)   
Hmmmm... this is really interesting. Thanks for the information. It will be really interesting to see what comes out of this and what the end result will be.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 1/15/2007 3:41 PM (GMT -7)   
Golly, should this be stickyed hippmom?

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/15/2007 4:23 PM (GMT -7)   
I don't have the capability of making it a sticky, but we can keep it bumped up near the top for a while so people can see it.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 1/16/2007 10:27 AM (GMT -7)   

suncat
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/24/2007 9:46 AM (GMT -7)   
This is a very interesting article ... The only thing I find a little weird, is the description of the drug VALCYTE in the PDF documents on ROCHEs webpages:

"Valcyte is an anti-viral medicine used to treat cytomegalovirus in people who have aquired auto immune deficiency syndrome(AIDS)"

Personally, I got CFS after a primary infection of Herpes Simplex 1 year ago. A few days ago I started taking Acyclovir, which is supposedly taken in acute infections of herpes simplex, and neutralizes the virus. Lets see if it has any effect...
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