1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 28, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    What did you do to improve your brain condition?
     
  2. November Girl

    November Girl Senior Member

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    Many, many things including lots of time. Some of them, in no particular order -
    REST
    Omega 3, at least 3,000 a day - don't remember if that is iu or mg

    I'm exhausted at the moment - will come back later when thinking better
     
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  3. Leopardtail

    Leopardtail Senior Member

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    I think its very important her to pay close attention to the conclusions of the study. It states that immune activation could be causing the SYMPTOMS of the disease. That is very far from stating that an Etiology of enduring cause has been found. For example and underfuctioning immune system could case relentless low level infection and permanent activation, as could poor mito function.
    This confirms what we already know - immunity is problematic and that the name ME is as good as any...
     
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  4. osisposis

    osisposis

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    Acta Neuropathol. 2014 Apr;127(4):459-75. doi: 10.1007/s00401-014-1261-7. Epub 2014 Feb 20.
    Olfactory bulb involvement in neurodegenerative diseases.
    Attems J1, Walker L, Jellinger KA.
    Author information
    Abstract

     
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  5. osisposis

    osisposis

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  6. osisposis

    osisposis

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    Biofilms in Chronic Rhinosinusitis February 2014
    1
    TITLE
    :
    Biofilms in Chronic Rhinosinusitis
    SOURCE: Grand Rounds Presentation,
    The University of Texas Medical Branch in Galveston, Department of Otolaryngology
    DATE: February 19, 2014
    RESIDENT PHYSICIAN:
    Angelia Natili, MD
    ATTENDING PHYSICIAN
    AND DISCUSSANT
    :
    Bruce Leipzig, MD
    SERIES EDITOR: Francis B. Quinn, Jr., MD, FACS
    ARCHIVIST: Melinda Stoner Quinn, MSICS
    http://www.utmb.edu/otoref/Grnds/2014-02-19-biofilm-sinus-Natali/biofilm-2014-02.pdf
     
    AbbyDear likes this.
  7. osisposis

    osisposis

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    Clin Exp Allergy. 2014 Jan;44(1):121-9. doi: 10.1111/cea.12225.
    High prevalence of anaphylaxis in patients with systemic mastocytosis - a single-centre experience.

    http://www.ncbi.nlm.nih.gov/pubmed/24164252



    Int Arch Allergy Immunol. 2012;157(4):399-405. doi: 10.1159/000329218. Epub 2011 Nov 25.
    Severe life-threatening or disabling anaphylaxis in patients with systemic mastocytosis: a single-center experience.

    http://www.ncbi.nlm.nih.gov/pubmed/22123213
     
  8. Izola

    Izola Senior Member

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    My illness started out with a serious encephalitis so pronounced that through the thicket of the encephalitis I knew immediately, well, within a short time, what it was. I couldn't speak properly so I faked it. Several of my daughter's neurologists (she had a serious childhood illness) sat and conversed with me for long periods. I think they were trying to figure it out. I never told them I was ill. Newly divorced, I didn't want to lose custody to her party guy dad. Yes, he was a lot of fun until responsibility set in and he couldn't handle it. My own doctors ignored the ongoing encephalitis. Boy, do I ever have some skeery stories about being mentally impaired and hiding it. Still am impaired. Don't like it. This new research is exciting! I wish I could still understand the new research, but my head has holes! Iz
     
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  9. Leopardtail

    Leopardtail Senior Member

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    are those papers all ME related?
     
  10. osisposis

    osisposis

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    I think they could, it might depend on how you got to this point. I got ill from WDB/water damaged building/home exposure, my sinuses/brain route was very involved and I know my olfactory system is damaged, I'm guessing beyond self repair. sorry, not up to much writing at this time. new here but been around long time, been researching about 8+ years.
     
  11. osisposis

    osisposis

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    sorry again, that was meant as reply to you.
     
  12. AbbyDear

    AbbyDear

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    @osisposis i pretty sure i got olfactory damage also.
     
  13. Aerose91

    Aerose91 Senior Member

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    I sympathize with you completely on this. Nothing harder than fighting the hardest battle a human can possibly fight while trying to keep normal daily activities appear unaffected. I don't know which is worse, the torture of feeling yourself slip into psychosis and having no power to help it, or having that happen at the same time you're around people that think you're lying anyway and trying to hold a dinner conversation.
     
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  14. alex3619

    alex3619 Senior Member

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    You might like to read my blog: http://forums.phoenixrising.me/index.php?entries/masks.680/

    Its not only that we feel driven to pretend to be normal. Its that we can operate on learned responses, even speech. Ask me how I am and unless I have lost enough cognitive function that either I cannot understand you or cannot speak any more, then I can give a reply. Its just not a considered reply unless my brain is operating at an OK level.

    An amusing side note is that some people think I am too far gone to notice what they say. They forget I get short periods of OK brain capacity ... and then I rethink what they said. Presuming I can even remember it of course.;)
     
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  15. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Biofilms are getting more and more attention. A biofilm in one spot could lead to heart attack or stroke. In another it could lead to neurological damage. One cause, different locations, different consequences.

    Biofilms in the vasculature of the brain, for example, could constantly trigger a brain inflammatory response. Say, that sounds like something ...
     
    Last edited: Jun 20, 2014
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  16. osisposis

    osisposis

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  17. osisposis

    osisposis

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  18. SDSue

    SDSue Florida

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    I definitely feel increased brain inflammation when I read or think too much. The POTS analogy is accurate. Stopping the activity at hand isn't an option; it's mandatory. Even then, once over that line it can take hours or days to recover from the buzzing, increase fog, and pain.

    I know that my brain is inflamed - I feel it, I hear it, and I live with it daily.
    Did he say what that direct action might be? A "friend" wants to know.;)
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
  20. Aerose91

    Aerose91 Senior Member

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    His opinion was anti-psychotic medication and steroids. Needless to say I moved on to another doctor
     

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