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

[Guest guest]

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.