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Webinar on OI and Brain Blood Flow

Discussion in 'General ME/CFS News' started by jspotila, Mar 11, 2010.

  1. jspotila

    jspotila Senior Member

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    From the CFIDS Association monthly webinar series (save the third Thursday of every month!):

    At the last webinar, the attendees were polled on whose research they would most like to hear about and Dr. Medow came in first (by a slim margin). More webinars about research and other topics of interest to the CFS community are planned.
     
  2. shrewsbury

    shrewsbury member

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    Thanks for letting us know Jenny. What a great idea.

    Did you mark it on the calendar?
     
  3. Cort

    Cort Phoenix Rising Founder

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    I got it on the calendar hours ago. I probably got it up before Jenny even knew about it :)

    I'm really looking forward to it -I think the blood vessels are a fascinating part of all this. (who knew?)
     
  4. bel canto

    bel canto Senior Member

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    Thank you all so much! This looks really interesting.

    Are you aware of the recent research positing that multiple sclerosis may result from vascular causes? Specifically, veins that drain from the brain becoming nearly completely blocked. Probably not at all related, but since a significant majority of MS patients also fit many of the CFS symptoms, I'm always interested in information that could relate to both. We have both in my family, as well as significant numbers of autoimmune diseases. And our MS patient has POTS.

    Anyway, thanks again for all the time and effort you put in on this forum, Cort. And thanks to all your many dedicated participants.
     
  5. Cort

    Cort Phoenix Rising Founder

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    There's that Baraniuk brain proteome study that suggested vascular problems in the brain perhaps caused by aggregations of amyloidic proteins punching out the sides of blood vessels causing damage.
     
  6. natasa778

    natasa778 Senior Member

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    Impaired blood flow could be down to oxidative stress and/or to dysfunctional ion trafficking of vascular epithelium.
     
  7. natasa778

    natasa778 Senior Member

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    sorry meant to say vascular endothelium...
     
  8. Gerwyn

    Gerwyn Guest

    a possible biomarker
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I had a few doctors say it looked like I have CFS and I had drawn a similar conclusion in my own Internet research. But what made it very clear and ended my questioning was the study Komaroff did on hypotension and CFS. I have had, what was diagnosed as vasovagal hypotension. I had fainting spells every couple of years, triggered by sudden pain, sudden embarrassment, etc.

    Thank you Komaroff. Knowledge is power.

    Tina
     
  10. jspotila

    jspotila Senior Member

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    I fainted in a staff meeting once. Good times.
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yeah, well mine started when I was five. And mine led to seizures, in the sense I lost bladder control. Happened every couple of years. At 7, while sitting in admittance area of hospital, I fell off the end of table I was sitting on. Dad thought I was joking. Then doctors came and tested pulse in my neck. They couldn't feel it because blood pressure had dropped. And I wasn't breathing right. So they gave me CPR. I will never forget waking up to five doctors leaning over me looking at me like they wanted to see what I would do next. All of this over the anxiety of going into hospital for tonsillectomy. It was after that incident that my mom took me to neurologist.

    After the EEG and other tests, it was the nurse in the neurologist's office that detected it. She took my blood pressure sitting, laying down and standing. She did it again and again to make sure. Then the neurologist came in, did the same thing, again and again. And then he had me walk back and forth in the room.

    He then explained things to my mom. At seven, the way I understood it is that my blood pressure goes up when it should go down and it goes down when it should go up. So if I ever feel faint, I should lay down as quick as I can.

    This has been such a part of my life for so many years. And any time I see a new doctor, I explain it to them. If only the doctors had known of the Komaroff study connection with CFS, I would have been diagnosed earlier.

    Tina
     
  12. jspotila

    jspotila Senior Member

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    Update on webinar:

     

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