XMRV Replication Study in Sweden

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Nov 26, 2009.

  1. QuayMan

    QuayMan Member

    An exploration of the relationship between XMRV and ME/CFS has just begun in Sweden, with funding provided jointly by ME Research UK and the Irish ME Trust http://www.imet.ie/

    Further details can be found at the specific webpage http://www.meresearch.org.uk/research/projects/xmrvsweden.html, and the key text is given below.

    Title
    Independent confirmation of the relationship between XMRV and ME/CFS in Sweden

    Investigators
    Prof Jonas Blomberg and Prof Carl-Gerhard Gottfries

    Institutions
    Sect of Clinical Virology, Uppsala University Hospital, Uppsala, Sweden; Institution for Neuroscience and Physiology at the Sahlgrenska Academy, Gothenburg University, and Gottfries Clinic, Mölndal, Sweden

    Background and Aims
    The discovery of a retroviral link to ME/CFS, reported recently in the major journal Science http://www.sciencemag.org/cgi/content/abstract/326/5952/585 (Science 2009;326(5952):530-1) has the potential to greatly advance diagnosis and treatment of the illness (see our overview essay, XMRV and ME/CFS - A stunning find http://www.meresearch.org.uk/information/publications/xmrvfind.html). The major finding was that DNA from the XMRV virus could be detected in the peripheral blood mononuclear cells of over two-thirds of ME/CFS patients' samples from the blood bank in the Whittemore Peterson Institute tissue repository http://www.wpinstitute.org/research/research_biobank.html, but in less than 4% of healthy control samples. Also, the researchers reported that XMRV proteins were being expressed in blood cells from ME/CFS patients at very high levels compared with controls, and that patient-derived XMRV was infectious and transmissible.

    These findings have caught the attention of the scientific world, but the next steps are equally important. Chief among these is for independent laboratories across the world to attempt the replication of the WPI findings among their own local populations of ME/CFS patients - it's sometimes said that replication studies are where the rubber meets the road in science! Since the WPI researchers used samples selected from several regions in the US where "outbreaks of CFS" had been documented (using patients diagnosed on CDC-1994 http://www.annals.org/cgi/content/full/121/12/953 and Canadian Clinical criteria 2003 http://www.cfids-cab.org/MESA/ccpc.html), blood samples from patients in other areas or countries might throw up very different results. Will ME/CFS samples from other regions of the US show similar high rates of positivity? What about European samples?

    This replication study is one attempt to answer this question - to establish whether XMRV nucleic acid can be found in peripheral blood mononuclear cells, plasma and serum of Swedish patients and controls. The researchers will retrospectively test previously stored patients' samples (20 Fukuda-defined ME/CFS, 20 fibromyalgia, 20 irritable bowel), and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients (defined on the Fukuda 1994 and the Canadian 2003 criteria, similar to patients in the original 2009 report in Science) who will also have functional assessments.

    The investigators are well-placed to conduct this confirmation study. Prof Blomberg http://www.medsci.uu.se/fogrupp/virology/virology.htm is head of the Research Group of Clinical Virology at the University of Uppsala, and his research interests include human endogenous retroviruses; the links between endogenous retroviral sequences (ERVs) of the human genome and diseases such as multiple sclerosis and schizophrenia; and the development of real time PCRs for common viral infections. Prof Carl-Gerhard Gottfries is Professor Emeritus at the Sahlgrenska University Hospital, Mölndal, and founder of the Gottfries Clinic AB http://www.gottfriesclinic.com/hem.html which was formed in Västra Götaland 1998 for patients with fibromyalgia and ME/CFS, and which is now situated in Mölndal. The unit has three doctors, nurses and medical secretaries, and it has also conducted basic clinical research, including trials of immunomodulatory therapy for FM and CFS.

    The results of this important replication study should be available in the Spring/Summer of 2010.



    Dr Neil C. Abbot, ME Research UK, The Gateway, North Methven St, Perth PH1 5PP, UK http://www.meresearch.org.uk/

    Declan Carroll, Irish ME Trust, Carmichael House, North Brunswick Street, Dublin 7 http://www.imet.ie/
  2. ladybugmandy

    ladybugmandy Member

    great to see this! thank you for posting!
  3. quanked

    quanked Member

    Thanks so much for posting this. How incredibly quick. This helps build my hope.
  4. springrose22

    springrose22 New Member

    Thank you so much for this information. I will be following this closely. Marie
  5. QuayMan

    QuayMan Member

  6. skeptik2

    skeptik2 Member

    Ain't this stuff exciting?

    To have them trying to replicate the XMRV findings so quickly
    seems like some kind of a miracle, doesn't it?

    The 75 scientists interested in XMRV that met in Cleveland this
    past week proved that an article in 'Science' is nothing to be
    sneezed at, isn't it?

    I can hardly breathe, I can hardly wait until the first group
    does replicate these findings; however, we must not hold our
    collective breaths too long, as factors in certain parts of the
    world may be different than in the U.S. We must be patient,
    not just patients, right?

    Oh, heck, I'm still excited.

    Thanks for the post, Quayman...

    skeptik2

  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    All this excitement from a skeptic.

    Tina
  8. mbofov

    mbofov Active Member

    This is great news. I especially liked how they were going to pick the people they study, generally using the Fukuda and/or Canadian definitions - not the current meaningless CDC definition!

    Mary
  9. FibroFay

    FibroFay New Member

    This is Wonderful news! So happy to see it.

    Fay
  10. QuayMan

    QuayMan Member

    Thanks folks.

    Thanks particularly should go to the ME Research UK and IMET and their supporters. Without money, this couldn't have happened.
  11. QuayMan

    QuayMan Member

  12. QuayMan

    QuayMan Member

  13. QuayMan

    QuayMan Member

    Anyone know anything about the Swedish researchers involved? There main job is just to take the blood I suppose but would be curious.
  14. QuayMan

    QuayMan Member

    It's not that exciting but I found article by Prof. Blomberg on XMRV (in English although the English isn't perfect)
    http://diagnosesupport.com/main/content/view/187/162/

    Original article in Swedisch: http://www.smittskyddsinstitutet.se/publikationer/smis-nyhetsbrev/epi-aktuellt/epi-aktuellt-2009/epi-aktuellt-vol-8-nr-45-5-november-2009-/#p15499
  15. skeptik2

    skeptik2 Member

    I may just have to change my username, right?

    Small price to pay for hope!

    NO TEST=NO HELP=NO HOPE

    skeptik2
  16. QuayMan

    QuayMan Member

    Posted on Co-Cure by Dr. Marc-Alexander Fluks

    Source: Di.se
    Date: October 13, 2009
    URL:
    http://di.se/Nyheter/?page=/Artiklar/Viruset_bakom_kronisk_trotthet_och_prostatacancer_hittat_.aspx?ArticleID=2009\10%5C13\356695
    The text below was translated from Swedish to English
    by Google-translation (http://www.google.com/language_tools )
    Rem: It was announced recently by ME Research UK and the Irish
    ME Trust that Jonas Blomberg (http://www.ucg.uu.se/JBlomberg.html )
    and Carl-Gerhard Gottfries (http://www.gottfriesclinic.com ,
    http://www.gefrix.com ) will take care of an 'Independent
    confirmation of the relationship between XMRV and ME/CFS in
    Sweden'.


    The virus of chronic fatigue and prostate cancer found?
    -------------------------------------------------------

    A newly discovered virus may be responsible for both prostate
    cancer and the mysterious disease, chronic fatigue syndrome,
    according to U.S. researchers. The findings have triggered a
    frantic activity including here in Sweden.

    Nobody knows what the virus does, how common it is and how it
    infects. "This is the most exciting since the HIV virus was
    discovered. It is something we will hear very much about the
    next few years", says Jonas Blomberg, professor of clinical
    virology at Uppsala University.

    He and his associates are now planning a study to analyze the
    presence of the virus XMRV among Swedish patients with prostate
    cancer and chronic fatigue syndrome, also known as myalgic
    encephalomyelitis (ME). "We have already test well, it's only
    the samples taken," said Jonas Blomberg.

    The facts are that U.S. teams have found the virus in one
    quarter of the 200 evaluated aggressive prostate tumors compared
    to six percent among the healthy controls (PNAS 090908), and in
    68 of 101 patients with fatigue syndrome, compared with just
    under four in every hundred among the healthy controls (Science
    091,008).

    "When I first saw this I knew not what to think of it's two
    radically different diagnoses," says Jonas Blomberg.

    Inflammation could be the common denominator. The virus may be
    immune system to react in some way that leads to illness, but
    how it then goes to is still a mystery.

    The newly discovered virus XMRV (xenotrophic murine leukemia-
    related viruses), is a so-called gammaretorvirus. There are in
    the genome of mice. Anyway so far unknown way the virus seems
    to have taken over from mice to humans - is unclear when, but
    probably fairly recently.

    The latest studies suggest that four to six percent of the
    population in different parts of the United States are carriers,
    but even that is unclear and need to be addressed in future
    studies.

    That prostate cancer exists, no question, but a diagnosis of
    chronic fatigue syndrome has been questioned since the 1800s.

    And is characterized by a marked, persistent fatigue that is not
    going over with sleep. In addition, patients often diffuse
    symptoms such as pain and signs that the immune system is
    affected and reduced. Patients are often passed around between
    psychiatric and somatic care.

    How many people are affected in Sweden is unclear, Insurance
    statistics on diagnoses that provide sick pay and sick pay are
    not as detailed, but in the whole world believed 17 million
    people suffer from the state, the researchers write in Science.

    The new findings mean that patients with chronic fatigue probably
    can look forward to a diagnostic test in the future, given that
    U.S. scientists' findings are in other studies. And if the virus
    can be specifically linked to disease emergence, it may even be
    able to deal with effective drugs.

    "This is really light in the tunnel for ME patients", says Jonas
    Blomberg.

    But many questions remain to be answered. To begin with, other
    research groups, which Blomberg, repeating the U.S. researchers'
    findings before the findings can be taken for scientific truth.

    And if the virus can actually be linked to the disease must have
    sort out what it does to the human body, and why some people get
    sick but not others. The virus is directly involved in disease
    emergence, or it just happens to be there as a result of a general
    immuno-compromised?

    How contagious XMRV is also unknown. The scientists who pioneered
    the discovery inclined to sexual transmission, perhaps because the
    virus has some similarities to HIV. Other researchers think more
    of blood transmitted infections.

    "How severe is the risk of blood banks? Should we consider testing
    the blood?" says Stuart Le Grice, Director at the U.S. National
    Cancer Institute, the New York Times. He adds that there are no
    signs that the virus spread in the population. "I do not want to
    scare anyone."

    --------
    (c) 2009 De.se
  17. QuayMan

    QuayMan Member

    Posted on Co-Cure by Dr. Marc-Alexander Fluks

    Source: Di.se
    Date: October 13, 2009
    URL:
    http://di.se/Nyheter/?page=/Artiklar/Viruset_bakom_kronisk_trotthet_och_prostatacancer_hittat_.aspx?ArticleID=2009\10%5C13\356695
    The text below was translated from Swedish to English
    by Google-translation (http://www.google.com/language_tools )
    Rem: It was announced recently by ME Research UK and the Irish
    ME Trust that Jonas Blomberg (http://www.ucg.uu.se/JBlomberg.html )
    and Carl-Gerhard Gottfries (http://www.gottfriesclinic.com ,
    http://www.gefrix.com ) will take care of an 'Independent
    confirmation of the relationship between XMRV and ME/CFS in
    Sweden'.


    The virus of chronic fatigue and prostate cancer found?
    -------------------------------------------------------

    A newly discovered virus may be responsible for both prostate
    cancer and the mysterious disease, chronic fatigue syndrome,
    according to U.S. researchers. The findings have triggered a
    frantic activity including here in Sweden.

    Nobody knows what the virus does, how common it is and how it
    infects. "This is the most exciting since the HIV virus was
    discovered. It is something we will hear very much about the
    next few years", says Jonas Blomberg, professor of clinical
    virology at Uppsala University.

    He and his associates are now planning a study to analyze the
    presence of the virus XMRV among Swedish patients with prostate
    cancer and chronic fatigue syndrome, also known as myalgic
    encephalomyelitis (ME). "We have already test well, it's only
    the samples taken," said Jonas Blomberg.

    The facts are that U.S. teams have found the virus in one
    quarter of the 200 evaluated aggressive prostate tumors compared
    to six percent among the healthy controls (PNAS 090908), and in
    68 of 101 patients with fatigue syndrome, compared with just
    under four in every hundred among the healthy controls (Science
    091,008).

    "When I first saw this I knew not what to think of it's two
    radically different diagnoses," says Jonas Blomberg.

    Inflammation could be the common denominator. The virus may be
    immune system to react in some way that leads to illness, but
    how it then goes to is still a mystery.

    The newly discovered virus XMRV (xenotrophic murine leukemia-
    related viruses), is a so-called gammaretorvirus. There are in
    the genome of mice. Anyway so far unknown way the virus seems
    to have taken over from mice to humans - is unclear when, but
    probably fairly recently.

    The latest studies suggest that four to six percent of the
    population in different parts of the United States are carriers,
    but even that is unclear and need to be addressed in future
    studies.

    That prostate cancer exists, no question, but a diagnosis of
    chronic fatigue syndrome has been questioned since the 1800s.

    And is characterized by a marked, persistent fatigue that is not
    going over with sleep. In addition, patients often diffuse
    symptoms such as pain and signs that the immune system is
    affected and reduced. Patients are often passed around between
    psychiatric and somatic care.

    How many people are affected in Sweden is unclear, Insurance
    statistics on diagnoses that provide sick pay and sick pay are
    not as detailed, but in the whole world believed 17 million
    people suffer from the state, the researchers write in Science.

    The new findings mean that patients with chronic fatigue probably
    can look forward to a diagnostic test in the future, given that
    U.S. scientists' findings are in other studies. And if the virus
    can be specifically linked to disease emergence, it may even be
    able to deal with effective drugs.

    "This is really light in the tunnel for ME patients", says Jonas
    Blomberg.

    But many questions remain to be answered. To begin with, other
    research groups, which Blomberg, repeating the U.S. researchers'
    findings before the findings can be taken for scientific truth.

    And if the virus can actually be linked to the disease must have
    sort out what it does to the human body, and why some people get
    sick but not others. The virus is directly involved in disease
    emergence, or it just happens to be there as a result of a general
    immuno-compromised?

    How contagious XMRV is also unknown. The scientists who pioneered
    the discovery inclined to sexual transmission, perhaps because the
    virus has some similarities to HIV. Other researchers think more
    of blood transmitted infections.

    "How severe is the risk of blood banks? Should we consider testing
    the blood?" says Stuart Le Grice, Director at the U.S. National
    Cancer Institute, the New York Times. He adds that there are no
    signs that the virus spread in the population. "I do not want to
    scare anyone."

    --------
    (c) 2009 De.se
  18. tigercat411

    tigercat411 New Member

    I got Lupus at 16, and FM at 47, I always wondered if I had somehow gotten a virus as I had lived in an apt complex with a public swimming pool at 16. As they are now connecting a lot of things caused by viruses now...I look forward to more on this exciting news!