Cure for Viral related CFS??

Discussion in 'Fibromyalgia Main Forum' started by jarjar, May 18, 2006.

  1. jarjar

    jarjar New Member

    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 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
    [This Message was Edited on 05/18/2006]
  2. victoria

    victoria New Member

    thanks for the article! I wouldn't doubt many (most?) of us have combinations of bacterial/viral stealth infections...


  3. tlayne

    tlayne Member

    This sounds so promiseing!!!!! Wouldn't it be nice to finally end the fatigue!! Can you keep up on this, and let us know where it is going? So many of us are suffering from this unrelenting Fatigue.

    Thank you for posting this! Hugs, Tam
  4. jane32

    jane32 New Member

    I believe thsi is Valtrex. Most of us that go to the FFC are on this or Famvir. There has been a lot of research on the correct dose and the one I take it 9 a day. The pharmacy told me it was way too much but I am listening to my ffc dr. I noticed a change every time I incrased the dose. I woudl liek to think it helped a little but I still get fevers but the achiness and sore throats have subsided(hopefully for good!)Therefore, I think it helps but it is a long way from a cure.

    ANNXYZ New Member

    is valcyte and used for CMV ( very different from
    valtrex ) .
  6. deliarose

    deliarose New Member

    I was wondering if this was a drug that the FFC used. But as far as I can see Valtrex is valacyclovir, and the drug in the study is Valganciclovir or Valcyte.

    Dr Joseph Brewer, an infectious diseases specialist at St. Luke's Hospital in Kansas City, MO, who has done a lot of work in this field, says that Valtrex is unlikely to be effective in treating HHV6 which he believes is the culprit in CFS.

    Here's a line from a paper on his website.
    Date unknown.

    "Although not specifically studied, the other oral agents, famciclovir (Famvir) and valacyclovir (Valtrex) are likely to be ineffective as well."

  7. jarjar

    jarjar New Member

    If you research the drugs you will see that this is a different drug then Valtrex


    ANNXYZ New Member

    You may suffer terribly with this DD , but you stll have such a sharp mind! You provided a great explanation.

    I agree that the illness probably represents more than just a pathogen problem . There is something ( either due to infection or faulty brain wiring most likely) that scrambles our immune system ability to do its job properly . I get excited thinking that there may be something that can UNSCRAMBLE or RESET it ! May God graciously point these researchers in the right direction
    and SOON!!!!!!
  9. jarjar

    jarjar New Member

    I reread some material from my Lyme Dr. and in many of his lyme patients, HHV6 has actually been cultured{grown} out of their blood. If you grow a germ out of someone, that is the ultimate proof {gold standard} that they have the infection.

    So that backs up what you were saying about bacteria and viral related problems with our disease.
  10. JenniferAnn539

    JenniferAnn539 New Member


    Thanks so much for posting this encouraging article!

    [This Message was Edited on 05/18/2006]
  11. deliarose

    deliarose New Member

    All very interesting, but I'm wondering if anyone out there is on or has tried this drug?

    I wonder if any of Joe Brewer's patients are on it. Do we have any Joe brewer patients on the board?

  12. jarjar

    jarjar New Member

    To me this appears something they have just recently stumbled upon. As the drug was only licensed for HHV6 of the eye. If anyone is a patient of Dr. Brewer's they need to contact him with this material. This type of treatment is right up his alley.

    I used the cure word with a question mark only to get peoples attention. So often interesting post are overlooked because of unexciting titles.

  13. Mikie

    Mikie Moderator

    Because there have been defective genes identified in PWC, I doubt that there will be a cure unless it involves these genes. That said, however, we can definitely achieve remission. Most everyone has at least been exposed to one of the Herpes-Family Viruses in his or her lifetime. These viruses never go away but they can go latent when they cause no symptoms. Many physicians now use antivirals to help drive the chronic viral infections into a latent state. If one gets sick or injured, these infections can reactivate.

    I was on Famvir for 1 1/2 years. Eventually, I decided to switch to transfer factors because they train one's immune system to identify and kill targeted pathogens. I took the TF's for three months. Immunity isn't permanent and I do have to pulse the TF's for a couple of days every six weeks. HHV-6 is very difficult to control. The TF's seem to be better with this virus than the AV's.

    Those with Lyme or mycoplasma infections often develop Herpes-Family Viral infection reactivations. This is likely what happened to me. I do not believe we can achieve healing until we address our chronic infections.

    Love, Mikie
  14. Tantallon

    Tantallon New Member

    this info might come in very handy.

  15. heathnicole

    heathnicole New Member

    I have taken both Valtrex and the Valencloir drug and no change in me although I only took for a few months
    Anyone else?
    My doc told me Valtrex was much more exensive but worked quicker.
  16. Mikie

    Mikie Moderator

    I think it's helpful to take an AV first to get the viral load down but for the long haul, the TF's seem to work better, using the body's own immune system.

    Love, Mikie
  17. cf-s-ex

    cf-s-ex New Member

    Here's a link to a related article I found on this topic:

    Just came out the other day (May 17)
    [This Message was Edited on 05/20/2006]
  18. ANNXYZ

    ANNXYZ New Member

    as possibly being able to restore the balance of the immune system : Has anyone heard of it ?

    It sounds at least like researchers are getting more clues to the underlying cause of CFS - " the genes in the white cells are switched on and off in an abnormal fashion" .

    For all of those who believe in prayer , let's petition for the researcher's to be divinely granted some
    dramatic clues that solve the puzzle.

    If anyone finds out about interferon beta , please share
    what you discover or are familiar with .

    Thanks !!
  19. ANNXYZ

    ANNXYZ New Member

    I just looked up interferon beta and it appears to be tthe same beta seron that many folks with MS take.
    I have friends with MS , and beta seron made them feel fuish and sick . Some had to stop taking it .

    I am more optimistic about valcyte than beta seron, personally .

  20. morningsonshine

    morningsonshine New Member

    "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,"


    They sure don't have to live with this DD do they!

    Now, why have i been told by two doc. that there is no point in testing for these viruses, Because 90% of the human population will test positive for them???
    We all carry those viruses it part of being human.

    That what the LLMD dr. told me when i asked about testing.

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