Could this be a cure for ME

Discussion in 'Fibromyalgia Main Forum' started by GigglePoet, Aug 17, 2008.

  1. GigglePoet

    GigglePoet New Member

    Is this the cure for ME?
    Is this the cure for ME? | Mail Online By JEROME BURNE, Daily Mail
    Last updated at 11:53 16 May 2006

    Comments (49)
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    A herpes drug may improve patients with chronic fatigue syndrome

    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.

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    Comments (49)
    Here's what readers have had to say so far. Why not add your thoughts below?

    Great news and great comments too. I have rarely been tempted to read so many.
    I hope a few of those stick in the mud doctors who have made light of their patients' misery in the past read them. I doubt if those sort of doctors read anything!

    - Andrew Kirby, Nr Malvern, UK, 12/6/2006 18:30

    After years of disbelief from GPs, friends, family and school our daughter was finally diagnosed with ME.
    The heartache watching a child suffer the isolation and agonies of this wretched illnes are undescribable. We need support to get our voice heard.
    Believe me if these people who say its "all in the mind" sufferred or lived with ME for just one week they would soon alter their opinions.

    - Flora Mckenzie, Witney England, 12/6/2006 15:32

    If IgG antibodies are above 1:360 or EBV early antigen antibodies are 1:160 or above, it is generally a sign of active infectin. The virus is very cell associated meaning that it is transmitted cell
  2. simonedb

    simonedb Member

    always good to see research trying to get to the heart of it instead of just psychotherapy
  3. ladybugmandy

    ladybugmandy Member

    hello! please do a search for valcyte on this board. you will find that many members here have already started treatment with the drug referred to in this article, including myself.

    dr. montoya has already completed his larger, follow-up study, which is expected to show some improvement with the drug. it will likely be published early next year.

  4. Catseye

    Catseye Member

    If this was your only issue, it could be a cure. But once you've got all the cfs symptoms, and gone "over the edge", then you have many other metabolic issues to contend with that probably won't be able to fix themselves. Things like liver congestion, gut dysbiosis, heavy metals, digestion malfunction (which includes the immune system), hormonal issues, etc. - these all need to be fixed. And if you've gotten really bad, then you have other infections that cropped up while the immune system was down. It's not an impossible fix, but you have to approach it carefully and with proper testing. You methodically go after each cause of symptoms in a specific order and remove them. Then the symptoms dry up one by one. The real downside for most people is the cost and the diet adjustment.

    If the virus was what caused cfs in the first place, you will have to do something about it, but there are usually other factors. A major lifestyle adjustment is almost always in order.