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Article: WPI Says No to Retraction Request/ Levy Study Dashes Hopes /NCI Shuts the Door on XMRV

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 1, 2011.

  1. ukxmrv

    ukxmrv Senior Member

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    In the late 80's patients with ME in the UK were given the VP1 blood test for entrovirus infection. The ME Assn collected the results but not enough patients were positive. Apart from Amantadine we were given no treatment even if the VP1 was +.

    Obviously we need better tests and treatment. I think that Chia is doing a VP1 test on stomach tissue?
     
  2. Cort

    Cort Phoenix Rising Founder

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    Good for you :D

    I hope it feels better :)
     
  3. Cort

    Cort Phoenix Rising Founder

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    The big problem with enteroviruses is how to treat them. Alot of doctors don't test for them because they believe there's no treatment for them....Chia believes a new drug will be coming out in the not too distant future that is not for enteroviruses per se but he thinks will work with them.
     
  4. Sasha

    Sasha Fine, thank you

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    I hadn't heard that - do you mean that in locations where there were polio outbreaks, they were followed soon after by ME outbreaks? Or that people who got polio developed ME symptoms?
     
  5. WillowJ

    WillowJ Senior Member

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    in the LA General Hospital outbreak (50s? 30s?), it was documented that every person who came down with ME, walked through the polio ward
     
  6. WillowJ

    WillowJ Senior Member

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    but why do some people recover and others not? couldn't this be due to a retrovirus disabling a portion of the immune system (namely, the viral defense portion)? if not, why not?
     
  7. floydguy

    floydguy Senior Member

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    I hate to state the obvious but one answer is that those people might not have had an enterovirus infection.
     
  8. WillowJ

    WillowJ Senior Member

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    meant to say, why do some people recover from the enterovirus infection, and others not. say in an outbreak situation where everyone has the same thing
     
  9. floydguy

    floydguy Senior Member

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    That may be true but it's such BS if there are those that do that. I can't believe that it's better to not test, which results in people going from doctor to doctor having one test after another, than it would be to do the test and say there is a fair chance that enteroviruses may be the cause but we can't do anything about them right now.
     
  10. dannybex

    dannybex Senior Member

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    I know I keep sounding like a broken record, but they also might not have been exposed to multiple other stressors, like many of us in the patient population have prior to that ultimate crash:

    Stressors/triggers such as environmental toxins -- pesticide exposures, hidden toxic mold or heavy metal issues and other chemical exposures. And then there's the potential of genetic factors which keep some from detoxifying these environmental and other stressors, as Rich has pointed out.

    Everyone gets viruses and deals with them every day, but a minority of us stay sick. This could very well be due to a retrovirus, but there are other possibilities as well.

    What do you think?
     
  11. floydguy

    floydguy Senior Member

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    I am with you!
     
  12. WillowJ

    WillowJ Senior Member

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    Many people are exposed to pesticides and other things and do not develop ME/CFS. There has to be a reason why some people get sick, and some do not. There also has to be a reaon why some of those who get sick get fibromyalgia, some CFS, some MCS, etc. (and of course, some all 2-3 of those I listed)

    Yes, genetics is another possible answer, or possibly part of the puzzle (genetics does not explain why a person can have minor infectious illnesses and recover, then suddenly get another seemingly minor infectious illness and not recover, when nothing seems substantially different)
     
  13. Gemini

    Gemini Senior Member

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    "With over 500 citations to his name, Dr. Levy may be the most prolific researcher yet to put his name on an XMRV study. A co-discoverer of HIV with a long history of gamma retroviral research he is well respected in the field."

    Since 1991, Dr. Levy has published 4 CFS articles dealing with immune system abnormalities, incl. NK cell function, and viruses:

    http://www.ncbi.nlm.nih.gov/pubmed?term=levy J AND chronic fatigue syndrome

    Be interesting to hear his opinions about recent gene expression studies, proteomics, virochips, systems biology, etc... Any possibility of a Q&A interview with him, Cort?
     
  14. Tulip

    Tulip Guest

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    Yes that's what I mean :)
     
  15. Tulip

    Tulip Guest

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    I'm not sure that science knows the answer to that yet!, they just know that 10% of the population do not fair well when a certain enterovirus attacks. The ones that have been most implicated in outbreaks dating back to 1934 have been coxsackie b and echo virus 9.
     
  16. Tulip

    Tulip Guest

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    There are two types of ME according to ME expert Dr Bryon Hyde. Primary ME which is caused by a virus and secondary ME which is caused by toxic chemical exposure such as a vaccine (think Lynn Gilderdale). Remember that the hallmark of ME is central nervous system damage caused by the virus or the toxic chemical, so there doesn't have to be other stressors involved. To me the enterovirus theory makes complete sense and it explains the disease so very well. I don't think that a retrovirus has anything to do with true ME, but it might with CFS.
     
  17. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    What research is Dr. P doing on HHV-6? Is there something new in the pipelines or is it just a further study of Valcyte....been there done that.

    Agree Enteroviral research NOW.

    If this negative study once again throws severe doubt that ME or CFS is a VIRAL disease what are we to do? First we have "Exercise and Psychotherapy treats Chronic fatigue syndrome" run all over the news and now nope, no retrovirus! (That's what people are going to think anyways) Are we all to be branded a bunch of malingering maladjusted mentally ill misfits. Why, oh Why, does this continue to happen to us? Please spend 5 minutes in my body. Just 5.

    P.S. Does anyone know how Andrea W is getting on these days? Obviously she as a patient and human being has the complete right to privacy about her medical treatment and everything else. I was just wondering if anyone knew. She has stated that she has ME.
     
  18. Tulip

    Tulip Guest

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    I know that is what I was thinking last night WHY. I don't get it! When will we all get a break, not be subjected to medical abuse and not have to complain about being abused by a so called caring profession - I have become a serial formal complainer because I have been abused by paramedics to cardiologists! It's shouldn't be that way. When will we be treated with respect??. It is depressing. I just wish that researchers would focus more on the enterovirus evidence.

    We need HOPE.
     
  19. alex3619

    alex3619 Senior Member

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    Hi Tulip, for the record I am positive for coxsackie 3B, which is also known to attack the heart muscle. These viruses do have a long track record with ME and CFS. However, we have needed research for a very long time on why they persist, or cause damage (presuming that they do), too much is not known. Bye, Alex
     
  20. floydguy

    floydguy Senior Member

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    I don't think that precludes a "stressor" that activates the virus though. I think there probably has to be multiple things going on.
     

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