Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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FDA/NIH findings in Belgian newspaper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Overstressed, Jun 28, 2010.

  1. Overstressed

    Overstressed Senior Member

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    Belgium
  2. pollycbr125

    pollycbr125 Senior Member

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    dont you just love google translate lmao ........ Because if there is a physical cause of CFS is detected, the patient also increases the hope for a real treat.:tear: hmm i fancy a treat a day out at the beach would be nice ;)
     
  3. Rivotril

    Rivotril Senior Member

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  4. hvs

    hvs Senior Member

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    And El Mundo

    http://www.elmundo.es/elmundosalud/2010/06/28/dolor/1277724239.html

    This El Mundo story takes for granted that the NIH/FDA paper is real.

    Meanwhile, a Dr. Beloqui prevaricates about whether or not to take measures to protect the blood supply of Spain because the WPI/FDA/NIH didn't find xmrv in all patients and, anyway, we don't know the precise mechanism by which xmrv makes you ill for the rest of your life. :Retro wink:
     
  5. ukxmrv

    ukxmrv Senior Member

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    London
    Thanks for that! I could do with a cure but a treat would be nice as well.
     
  6. Rivotril

    Rivotril Senior Member

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    the Spanish doctors still refer to the 67%, they are saying something like" still 33% hasn't got it..."
    hell!!! havent they read anything on XMRV last year, still referring to the 67% october 2009 number.....
    while we have the 95%+ for ages
     
  7. LaurelW

    LaurelW Senior Member

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    Utah
    I could use a treat--Or a whole series of them! Never thought it would be a treat to weed my garden and clean my house......
     
  8. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    This is popping all over the world, It needs to make it to the national stage now!!! we need to start seeing xmrv/cfs/me on major network news and health shows. The quicker this happens, the quicker we get $ for research and clinical trials etc.!!!!
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    To emphasize "still 33% don't got it" shows still don't believe, previous bias, or ignorance of later reports. I understand you don't take as gospel unless something is in published paper. So to say 98% got it would not be scientific. But to emphasize that 33% don't, is also not scientific, and shows where you mind is.

    As for a treat, great. Except, can't have any sugar, you know.

    Tina
     
  10. pollycbr125

    pollycbr125 Senior Member

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    I posted these articles on facebook however folk were having trouble translating them so i made a note .


    European XMRV Articles translated .

    I have posted a number ofEuropean XMRV articles though it appears folk are having problems with being able to translate them . So here they are .

    Article 1 Dutch

    http://www.nieuwsblad.be/article/detail.aspx?articleid=GLG2S4DUP


    Virus may be cause of CFS
    Saturday, June 26 2010 Author: (FDS)
    There is hope for patients with Chronic Fatigue (CFS). According to the American Institute of Health NIH is the disorder may be linked to virus.
    Myalgic encephalomyelitis, or CFS (ME) is an umbrella term for symptoms related to fatigue, chronic inflammation of the spinal cord and / or muscle pain. The cause of CFS is still shrouded in riddles. In our country it is still assumed that CFS is a psychological disorder. That's why this week, two physicians were ordered to pay back 635,000 euros to the disease due to the frequent prescription of expensive drugs for CVS patients.

    Not 'in the mind'

    For several years indicate growing evidence that CFS is not "between the ears', but is linked to viruses such as herpes and enteroviruses (the intestines). In October last year, American specialists published in the journal Science conducted a survey showing that 67 of their 101 CFS patients were infected with the retrovirus XMRV range. This virus is rare in healthy people and blood donors are (still) not scanned. The scientists assumed that XMRV through blood transfusions transmitted infection in causing CFS.

    That finding is now confirmed by Harvey Alter of the U.S. National Institutes of Health (NIH). Alternaria is the specialist in infections of NIH and the discoverer of the virus that causes hepatitis C. In late May he said in a conference decided that the figures in Science "extremely strong and probably correct. We (NIH) have their own research findings can be confirmed. Alter is not his statements in public again because he is working on an own publication.

    Yet CVS respond doctors and patients excited. Because if there is a physical cause for CFS is detected, the patients also increases the hope for a real treat.


    Article 2 French

    http://www.psychomedia.qc.ca/pn/modules.php?name=News&file=article&sid=7937


    The virus theory is confirmed for chronic fatigue syndrome
    Psychomedia - Published June 27, 2010
    A researcher influential NIH (NIH), Harvey Alter, chief of Infectious Diseases Section, supported the theory that a retrovirus XMRV virus (or viruses of xenotropic murine leukemia) would be responsible for fatigue syndrome Chronic (SFC) and says that two teams of government researchers have confirmed the association of independent, said a Dutch scientific journal Ortho report the Wall Street Journal and New Scientist. The news would be a great noise among the groups of patients, researchers and clinicians, raising hopes of a solid explanation for the disease and possible treatment.




    A link between the virus and chronic fatigue syndrome has been reported last year in the journal Science by researchers at the Peterson Institute Whitmore (Nevada, USA). But this theory has been widely criticized after several groups of investigators have failed to confirm the hypothesis.

    Last month, at a closed workshop in Zagreb was for the protection of blood banks, the researcher presented the link between CFS and the virus as being "extremely loud and probably true, despite the controversy." Researchers at the NIH and the Food and Drug Administration have confirmed this link.

    Moreover, there is a little over a week, the American Association of Blood Banks (AABB) has published a Bulletin of the Association recommending its members to actively discourage potential donors who received a diagnosis of CFS.

    An NIH spokesman confirmed to the Wall Street Journal about the researcher have been well reported but said could not comment on the study because the data have not yet been published. The researcher confirmed to reporters that the magazine Ortho search results will be published shortly.

    The researcher and his team estimated that the virus and related viruses are present in 3-7% of blood donors.

    See also:

    Finally a cause (virus) for chronic fatigue syndrome! (October 2009)
    Chronic fatigue, disappointment for the treatment: the viral cause is not confirmed (Jan. 2010)
    Chronic Fatigue and viruses: new study (February 2010)
    CASE Psychomedia: Chronic Fatigue Syndrome

    Psychomedia with sources:
    The Wall Street Journal, New Scientist, MMD Newswire (press release of the journal ORTHO)
    All rights reserved

    Article 3 Spanish

    http://www.elmundo.es/elmundosalud/2010/06/28/dolor/1277724239.html


    A VIRUS IN THE BLOOD
    Several countries are advised not to donate blood in case of having chronic fatigue
    Some studies indicate a possible disease-causing virus in the blood
    Future research should confirm this association of cause-effect
    Some countries and regions such as Catalonia and are taking preventive measures

    (Photo: Antonio Heredia)
    Updated Monday 28/06/2010 14:09 (CET)
    LAURA Tardn
    MADRID.- The answer to this question is not yet clear. A few months ago, research published in journal Science found that a high percentage of people with chronic fatigue syndrome (67%) was a virus called XMRV, present in the blood. Since then, countries like Canada are taking steps to ensure that patients diagnosed with the condition not to donate blood. The goal? Avoiding possible contaminated plasma transfusion and, therefore, the spread of the disease.

    However, the experts consulted by ELMUNDO.es insist that this hypothesis is not confirmed and requires further study. The work led by the scientist Vincent Lombardi had only 101 patients. "It is true that among them there was a high prevalence of HIV infection, but 33% did not present this abnormality, "said Oscar Beloqui, specialist of the University Hospital of Navarra. And more: "According to the same job, 4% of the healthy population also had the virus and nothing happens." Ultimately, further studies are needed and many are already underway.

    And in this line are American Drug Agency (FDA, according to its acronym in English) and U.S. National Institutes of Health (NIH, its acronym in English), whose investigations have also found the virus in the blood XMRV people diagnoticadas chronic fatigue. For this reason, some countries are considering whether these patients may or may not donate blood. In fact, American Association of Blood Banks recommended not to start when they suffered from this disease.

    No Spanish guidelines
    In Spain, according to some patient groups, "the diagnosis should not be affected blood donors." For its part, the Ministry of Health guidelines are not specific. According to sources in this body, "only allows for the donation of those people who are in perfect health." Although there is no specific reference to chronic fatigue syndrome, is defined as Beloqui explains that "a sick person, whether by the syndrome or any other, can not donate." They are health professionals who are responsible for screening out persons whose donation could present a risk to their health or to others.

    Although "in Spain there are no guidelines that say if people with chronic fatigue syndrome may or may not donate, since research was published in "Science" (October 2009), in Catalonia, we rule out the possibility that these patients donate , as a matter of utmost caution, although the cause-effect relationship is not yet conclusive, "says Luis Puig, director of the Division of Blood Blood and Tissue Bank of Barcelona. "Also, since not many people with this disease who come to donate blood (not usually found well enough to do so), this average does not significantly affect the stock of blood."

    Meanwhile, the specialist said, "we have initiated a study to verify the presence of XMRV virus in the blood of people diagnosed with this disease."

    As Dr. Beloqui, "continued progress in research to find the source of chronic fatigue syndrome, but we must not alarm with the new findings. This virus may be one more in the list of possible causes of the disease. " The question is, while confirming the relationship between the virus and this condition is relevant or not the affected donate blood. Countries like Canada and New Zealand and regions such as Catalonia, are clear. Preventively, bet on us to discard these candidates.


    There you go ;-)
     
  11. Rrrr

    Rrrr Senior Member

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    THANK YOU FOR PUTTING THAT WONDERFUL POST TOGETHER! it was exciting to read.
     
  12. Rivotril

    Rivotril Senior Member

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    thnxx for translations :)
     

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