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Mold, Dr. Cheney and ME/CFS

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Apr 27, 2010.

  1. Gerwyn

    Gerwyn Guest

    I am interested in evidence based medicine your comments were not evidenced based in any way.i merely pointed that out.i struggle how you interpret that to be snide.you are wrong XMRV was initially discovered as a result of the human genome project.They found a sequence that they could not account for.HAART therapy is very likely to prove fatal for patients with ME. 30% ofpatients without mitochondrial damage sufferserious irepairable damage after three years.That is evidence based medicine.Mold sensitive genes is not!
  2. Gerwyn

    Gerwyn Guest

    if you can post any scientific evidence re the existence of mold sensitive genes i would be interested in seeing it.i,m not interested in comments i am interested in evidence otr at least a hypothesis based on objectively measurable observations
  3. slayadragon

    slayadragon Senior Member

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    Absolutely, I will post information on this topic. As a social scientist (Ph.D., Northwestern University, 1998), I'm interested in evidence based medicine too, of course.

    Please stay tuned!

    Lisa
  4. Gerwyn

    Gerwyn Guest

  5. slayadragon

    slayadragon Senior Member

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    Kellogg School of Management, Northwestern University, Marketing Department (consistently rated #1 in the country). My Ph.D. advisor was Dr. David Messick, a highly published social psychology researcher who spent most of his career in the psychology department at UC Santa Barbara before moving to Kellogg late in his career.

    Unfortunately, my ability to work as an active academic scholar was taken away from me for more than a decade due to this illness. Hopefully my recovered health will allow me to move back to that work.

    I'm happy to share my credentials, but that's not why anyone should listen to me. The substance of the discussion is what matters.

    Contributing to this thread is not the only thing that I have to do with my time now. I am absolutely delighted to discuss any issues that anyone wants at whatever length they like, and I encourage them to be as ruthless as they like. Some other schools used to send their own Ph.D. candidates to my department in order to be grilled by my own professors, so I'm quite accustomed to participating in that kind of debate and find it quite intellectually stimulating.

    However, I really must leave the thread again. Again, thanks to everyone for their comments.

    Best, Lisa Petrison
  6. Dreambirdie

    Dreambirdie work in progress

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    Thanks Lisa, for posting this info about mold. I've been taking it in with great interest and have my own story to add.

    I have a friend who had CFS and is now in total remission from it, and has been for many years. He lived in Marin County back in the 70's, and was a very successful and brilliant computer wizard, involved in the beginnings of that industry here in the Bay Area. One day he had an accident with a lawnmower, which somehow ran over his foot and severely injured it. The foot became so badly infected that gangrene began to set in. He was hospitalized and given and choice of either amputation or, as he put it "enough antibiotics for a bull." He chose the antibiotics, which saved his leg but destroyed his life as he knew it. Not long after this, his immune system fell apart completely, (his T-cell count fell below 300), he developed severe allergies to the point of becoming a universal reactor, (what is now called MCS), and collapsed into what he called an exhausted "coma like sleep" for the next 5 years, during which time he was able to remain conscious for only 3-4 hours/day. Because there was at that time, back in the late 70's, very little information regarding his illness, he was left to figure it all out mostly on his own. He consulted with several of the more famous MCS doctors (Dr Rea in Texas and Dr Randolph in Chicago), and many brilliant alternative people (like Jeffrey Bland and others whose names I can't remember), but had only only limited success with any of the treatments he attempted... UNTIL he finally decided to completely give up all vestiges of his old life and move out to the desert, where he lived out of his car for most of the next fifteen years.

    According to him, living in the desert, away from all pesticides, perfumes, toxins and molds, was the most significant part of his ultimate cure. He took A LOT of supplements--a list of about 40 at one point, and was especially fond of the Sunrider herbs, but he insisted that none of that worked as well as it did when he was in the desert. Upon each return to civilization, he would have a toxic backslide, and with each return back to the desert, he would find relief and renewal of his energy. It took many years and a lot of perseverance for him to get completely well, and there were a LOT of ups and downs on that journey, but the last time I spoke with him (in 2004), he told me he now has "a life that is very different than the one (he) had back in the early 90's," when I fist met him. He travels all over the world, stays in hotels, and gets away with eating mostly whatever he wants. He lives in Arizona when he isn't travelling and is finally able to live in a HOUSE.

    He's been harping on me to get out of the Bay Area for years, as he thinks it saved his own life to do so. I can't imagine living out of my car in the desert, though I do know others who have done this with some limited success. But no one has done it AS successfully as this guy did.
  7. Gerwyn

    Gerwyn Guest

    i dont mean to be rude but what has management got to do with science

    I,m not sure what this has to do with science either Behaviourism is the antithesis of science.



    David M. Messick

    Emeritus Professor of Management and Organizations

    Management and Organizations

    B.A. 1961, Psychology, University of Delaware; M.A. 1964, Ph.D. 1965, Psychology, University of North Carolina

    Academic Positions Held


    Kellogg School of Management, Northwestern University,2007 to present
    Emeritus Professor of Management and Organizations

    Kellogg School of Management, Northwestern University, 1992 to 2007 Morris and Alice Kaplan Professor of Ethics and Decision in Management

    University of California, Santa Barbara, 1964-1992
    Professor of Psychology

    Courses / Topics Taught
    Ethical Decision Making
    Individual and Group Behavior
    Leadership
    Ethics

    I could however be completely wrong. Behavioual "science" generally does not use the scientific method and interprets observations in accordance to a strict paradigm specific perspective
  8. slayadragon

    slayadragon Senior Member

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    The understanding and use of the scientific method is the same regardless of the discipline. Insofar as one is looking and discussing "evidence-based medicine," the rules of engagement are the same. The only difference is the vocabulary.

    I've yet to meet a legitimate scholar from any discipline (medicine, physics, chemistry, whatever) who's disagreed with that point.

    I've shared my own background and real name, so that folks here can decide whether I'm qualified to participate in this discussion.

    Would you care to share your own?

    Respectfully, Lisa
  9. bluebell

    bluebell Guest

    When I first was diagnosed I remember googling this disease. The first, oh, 100 hits were all sites trying to sell me vitamins, to clean out the air ducts in my house, CDs, DVDs, expensive clinics with "the" cure. For this reason, I honestly think Gerwyn is one of the kindest people on this forum. I don't know much about science, but I know a little about human nature and about how people exploit those who are unfortunate or downright desperate. Gerwyn seems to be trying to keep those people out of my pockets, and the pockets of other people here who, like me, can't read a pubmed abstract without going cross-eyed. I am not on team Gerwyn, but I do have two PhD research scientists in my family and every time I ask them to look at the evidence for this or that, they invariably agree with his interpretation of what science does or does not know at present. I could not think of a way to write that without anthropomorphizing science, sorry (brain fog).

    Gerwyn writes and thinks like a scientist; that means he doesn't expect that attacks on information be interpreted as attacks on the transmitter. I would humbly suggest that those who have problems with something he writes use any scientifically trained contacts they have to confirm or deny his interpretation of the data. It would be way fun if someone caught a true error;-). Otherwise, it might help to view him as an alien from the planet science. I can tell you, they have different customs and languages there...but they come in peace.
  10. slayadragon

    slayadragon Senior Member

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    It's great to hear all of this, BlueBell. I look forward to a spirited intellectual discussion with Gerwyn.

    My problem is that I'm afraid that the moderators will remove the thread before I have a chance to respond. And I don't think that participating in this discussion should require my being chained to the computer all afternoon on a beautiful Saturday.

    Cort, would you please give me the benefit of the doubt and leave this up until I return?

    Thanks much,

    Lisa
  11. Dreambirdie

    Dreambirdie work in progress

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    Please do leave this thread up, Cort. I want to re-read parts of it later. Thanks
  12. Gerwyn

    Gerwyn Guest

    I have to date recovered remarkably well.It has nothing at all to do with mold.How did he know he had ME and not MCS.His picture appears to suggest the latter.
  13. slayadragon

    slayadragon Senior Member

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    Gerwyn wrote:

    >I could however be completely wrong. Behavioual "science" generally does not use the scientific method and interprets observations in accordance to a strict paradigm specific perspective.

    If you'd like, please elaborate on your understanding of how behavioral scientists use (or misuse) the scientific method. I then will let you know if your understanding is correct.

    Best, Lisa
  14. Gerwyn

    Gerwyn Guest

    behavioural science starts with the notion that environment determines behaviour.if it is still true the science stops there
  15. Dreambirdie

    Dreambirdie work in progress

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    According to him, he had both. He tested positive for MANY viral infections. There was no XMRV to test for in 1979.
  16. Gerwyn

    Gerwyn Guest

    did he get an objective diagnosis of ME or did he self diagnose?
  17. Dreambirdie

    Dreambirdie work in progress

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    Is this the inquisition? Cuz it sure sounds like it.

    I will email him and ask. If, and when, he gets back to me, I will let you know.
  18. Gerwyn

    Gerwyn Guest

    no DB not an inquisition just that his symptom profile and recovery are more suggestive of MCS than ME .If he had both which was the more disabling.His move back to civilisation provoking his symptoms and his move away relieving them all point to MCS. If this was caused by immune damage then it could eventually dissipate as the immune system repairs albeit very slowly.it is genuine scientific curiosity on my part
  19. bel canto

    bel canto Senior Member

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  20. slayadragon

    slayadragon Senior Member

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    Thanks for your thoughts, Bel Canto.

    I'd like to ask folks not to defend me here, please.

    I want this thread to be a discussion about the topic, not a discussion about whether we should have the discussion.

    I apologize for not responding to the substantive comments yet. I've had a busy and eventful day, and will do so soon.

    Best, Lisa

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