Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Klimas Conference Video 4: The Basics of Treating CFS/ME and GWI

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 10, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
    heapsreal and SOC like this.
  2. kday

    kday Senior Member

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    I don't understand why she only focuses on viruses.
     
  3. kday

    kday Senior Member

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    This is the problem I see. This is a syndrome involving a compromised immune system. In many, if not most cases, viruses, bacteria, and parasites may be implicated.

    I go to a CFS specialist, and they are only interested in looking at viruses. I go to an infectious disease doctor, and they aren't interested in looking at anything. So you have to navigate out of mainstream and find a "Lyme" doctor that treats the many chronic and opportunistic bacterial infections.

    What we really need is chronic infectious disease doctors or something along those lines.
     
    lnester7 likes this.
  4. Tristen

    Tristen Senior Member

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    Northern Ca. USA
    "When you push the autonomics, Dr. Rey observed, the disease in general seems to get worse".

    This is precisely what happens to me when I take ANY meds (as well as other stressors) that push my system. This is why I can't take any of the known stimulant meds that some PwME seem to benefit from. I can't even take cortisol at low doses without a crash, even though my labs show sub-clinical levels.

    Thanks for posting.
     
    Dreambirdie likes this.
  5. Jody

    Jody Senior Member

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    You're welcome, Tristen.:)

    I am the same way -- not as extremely as I used to be, but anything new, supplements or anything else in life, has to be started in ridiculously tiny doses. First time going for a walk after a long crash, is 5 minutes, then not again for a few days. New supplements are half the normal, and once a day not twice or three times. Learning to go for such tiny increments my body doesn't seem to notice, has been key for me. Very slowly, with only subtle increases, eventually I can get somewhere. But it has to start at a snail's pace. A snail with CFS.
     
    Tristen likes this.
  6. Helen

    Helen Senior Member

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    Maybe you have a CYP3A4 polymorphism? If you miss that enzyme you can´t metabolize 50-60% of all medicins (check even herbes) including cortison meds normally. The snip is analyzed in a 23andme test. A friend of mine with ME/CFS who reacts on almost everything now can explain most of the reactions when she knows her genetics in methylation and in the livers Phase 1 and 2 detoxification.
    I have the CYP3A4 mutation too. Bad, but at least good to know. Doctors take it seriously.
    The meds you can´t tolerate with a CYP3A4 mutation are listed in a testresult as an example from Genovation here
    (Liqourice slow down the metabolizing of cortisol that you produce, so it stays longer in the body. Might help you if you can´t take cortison. Recommend you to study this before trying as it affects the blood pressure - maybe you already knew this).
     
    globalpilot likes this.
  7. globalpilot

    globalpilot Senior Member

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    Interesting. There are 50 or so cyp3a4 genes on 23andme. What would one look for ?
     
  8. Helen

    Helen Senior Member

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    Good question :). I had the analyse from Genovation. I tried the link under internet information after CYP3A4 in the test result but it didn´t work. I suppose the only way is to ask Genovation which snip they analyse.
     

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