xmrv positive diagnosis fibromyalgia!

Discussion in 'Fibromyalgia Main Forum' started by hensue, Aug 24, 2010.

  1. hensue

    hensue New Member

    We now have confirmined paper by DR Alter and LO from the National Institute of Health and FDA.
    Look at the top of our message board. You need to get tested at VIP labs in Reno Nevada.

    We now have proof it is a retrovirus.
  2. AuntTammie

    AuntTammie New Member

    it's more evidence and certainly is good news in that regard, but it's not proof yet (& though there has been some connection with fibro, the studies have mainly focused on ME/CFS)

    .....and getting tested is still very expensive & will not really do any good at this point - once testing is covered by insurance and once it is possible to use the results to get better treatments, then it will make more sense to get tested
  3. heapsreal

    heapsreal New Member

    the retrovirus found by alter was different to wpi, but this just shows more potential causes of cfs/me or that xmrv changes somehow, maybe they might find the retrovirus DeFreitas found.
  4. hensue

    hensue New Member

    Research in CFS into higher gear
    Wednesday, August 25, 2010

    BRUSSELS - More and more scientific studies link chronic fatigue syndrome to a family of viruses.

    Scientists from the Free University of Brussels (VUB) , and the Belgian biotech company RED Laboratories recently examined CFS patients from different European countries, including Belgium, Norway and Sweden. Their results confirm recent U.S. findings: that most people who suffer from chronic fatigue syndrome are carriers of a retrovirus. Retroviruses, including the AIDS virus, bed into our genetic material.

    There were researchers from the University of Nevada at the end of last year were who first published about the link between CFS and viruses. 67 of the 101 screened patients were infected with the retrovirus XMRV, that is largely absent in healthy people. The researchers assumed that it is passed through blood transfusions.

    Four studies were subsequently conducted, found no link, but in May researchers from the National Institutes of Health confirmed findings which do.

    At the request of the Americans, the scientists also got to work in England and in Brussels. "They wanted to know whether it was a local phenomenon," said Professor Kenny De Meirleir, who led the VUB research. It wasn’t: In both studies, there were found gamma retroviruses at most patients.

    It is too early for a final breakthrough to talk, but De Meirleir has a good eye. "It seems that for the estimated 17 million patients in the CVS world an end to the long agony of recognition of their illness."

    CFS patients suffer from include fatigue, inflammation of the spinal cord, muscle and throat and headache. CFS, that hits women four times more than men, yet is often considered a mental illness. This is what usually happens with diseases for which no obvious cause is found. There is no effective treatment. As the Kenny and his colleagues proved right, this can change that. "Then CFS is something like chronic hepatitis." And the disease gets a different name. "Possibly GRD - gamma retroviral disease."

    [This Message was Edited on 08/25/2010]
  5. hensue

    hensue New Member

    In the first study that came out of the WPI in October Fibromyalgia patients were included.

    I was told by Dr Lombardi who did the actual blood test for me and I was not part of the study in Reno Nevada. He was the one that told me some fibromyalgia patients were included.

    Our symptoms which include the PEM. If you do any excersise or anything aerobic. In 24 hours later or earlier do you start having the symptoms of pain and severe fatigue sore throat and etc.
    Symptoms may vary

    I have fibromyalgia all the time though. If I do anything out of the ordinary and sometimes if I do not.
    I suffer more

    I think most of us are like that.

    My thought is this is one thing we have in common. Cfs symptoms are very similiar to fibromites.
    Some are worse as far as fatigue and some are bettter.

    Why would I get tested and spend that much money?? The symptoms of chronic fatigue and fibro are very similiar.

    It is just like when my husband found out many years ago he had hepatitis c. Back then they called it non a and non b Hepatitis.

    Now there are all kinds of different strains of hepatitis C. ( Dr. Alter found Hep C)

    Of course more knowledgeable people than me can explain it better.
    That is why all our symptoms vary different strains.

    I was told I had a Grandmother back in the day the Doc would have to come give her shots of morphine. WAY BACK in the day
    [This Message was Edited on 08/25/2010]