Re: Possible CFS cure -- has anyone tried valganci-clovir?

[Guest guest]

Tempe

These viral drugs are normally -SUPPOSEDLY only going to slow a

viral infection before it starts or is fully established. BAsically

early in the disease process. Antiviral;s are very fickle at best- I

feel they may have a little antibacterial, antifungal or even anti

toxin properties yet are not worth squat when they don't cure

anything IMO.Ealry in my ilness I found a small improvement- an

honest 20 % at best and this seemed to make my doctor feel it's an

honest appraisal of what he'd expect.

He basically laughed at the cost and no bang for the buck alot of

these antivirals have and have had in his patients.

>

> Is this the cure for ME/CFS?

> 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.

>

>

> A herpes drug may improve patients with chronic fatigue syndrome

> The results, reported at a scientific conference earlier this

month

> by Professor 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 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 Kerr of

St

> '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.

>