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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Rescheduled web presentation starting now

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CJB, Mar 25, 2010.

  1. CJB

    CJB Senior Member

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    Oregon
  2. Sasha

    Sasha Fine, thank you

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    I couldn't see this (software issue) - was it good? Anything we should know? Does anyone know if they're planning to put it on YouTube?
  3. Cort

    Cort Phoenix Rising Founder

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    I pulled a classic Cort boner: I thought 12pm - just like the last one except I'm on the West coast - so it as actually at nine....so typical.....
  4. jspotila

    jspotila Senior Member

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    Sasha, the presentations are recorded and archived on the Association's website. The slides are usually up within a day or so, and the full presentation follows a day or two later. Check here for updates: http://cfids.org/webinar/series2010.asp
  5. Sasha

    Sasha Fine, thank you

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    Thanks, Jennie - will it go onto your YouTube channel as well as be on mediaplayer?

    BTW, I was recently diagnosed with orthostatic intolerance despite never feeling dizzy or lightheaded when standing. I only suspected I had it because I find standing still more tiring than walking. I started a thread recommending people who get tired but not dizzy standing to check themselves out using an easy test. Several people with the same symptom profile did so and now believe they have OI.

    I've seen an estimate (can't remember where, sorry!) that about 2/3 people with ME have OI. I don't know what proportion of those with OI don't experience dizziness/lightheadedness but I am concerned that those who don't won't recognise themselves in the way that OI is almost always billed - in terms of dizziness/lightheadedness on standing. The CAA blurb about this presentation reads: "It has long been established that many people with CFS experience symptoms like light-headedness associated with upright posture, broadly called orthostatic intolerance." Would the CAA consider changing this to something like "Many people with CFS find standing still for even short periods of time extremely tiring and sometimes feel light-headed or dizzy when they do so" or something like that, if Dr Medow was happy with that?

    I'd be curious if Dr Medows knows the prevalence of not feeling dizzy on standing in people with OI, particularly in CFS.

    Thanks again - I'm really pleased that the CAA has put on a talk on such an interesting and important topic and I'm looking forward to seeing it on YouTube (if it goes there!.

    ETA: Getting a diagnosis of OI is extremely important because it's one of the symptoms of CFS that's treatable.
  6. CJB

    CJB Senior Member

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  7. Navid

    Navid Senior Member

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    good presentation...nice to see real medical/scientific study and facts about our illness. thanks CAA and Dr. Medow.
  8. Esther12

    Esther12 Senior Member

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    I've always had this - from long before I was ill. Standing up was always a real chore, while I would often end up walking about for pleasure. It seems I may well have had a collection of problems before getting ill which meant it was especially likely glandular fever was going to lead on to CFS. Drat.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And do you notice how often you want to prop your legs on another chair or ottoman when you are sitting?

    Tina
  10. Dr. Yes

    Dr. Yes Shame on You

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    Cort, PLEASE don't say that again.





  11. _Kim_

    _Kim_ Guest

    ...especially on a thread that is dealing with the subject of abnormal blood flow to the lower extremities
  12. Lynn

    Lynn Senior Member

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    For years my husband has called me Queen of the Ottoman Empire because I have an ottoman in every room!
  13. Dolphin

    Dolphin Senior Member

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    Are the slides going up? If they're not, I'd plug it to some people now but if they are, I want to wait.
  14. fds66

    fds66 Senior Member

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  15. shrewsbury

    shrewsbury member

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    hey Tom and fds66 - Jenny had said that the slides are usually up within 2 days (usually before the broadcast) so I just emailed the CAA to ask when the slides will be posted. Will let you know.
  16. shrewsbury

    shrewsbury member

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    Me - I'm always happy to hear of signs of life - mistimed or not
  17. fds66

    fds66 Senior Member

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    Thanks islandfinn for emailing them to find out.
  18. jspotila

    jspotila Senior Member

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    There are slides for Medow's presentation, and they will be available on the website. I spoke with staff this morning, and the slides will be going up soon. There was a delay due to the overhaul of the SolveCFS website to coincide with the BioBank announcement.
  19. shrewsbury

    shrewsbury member

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    Very impressive Jenny - that may be the quickest response to anything that I've ever received. Thank you!
  20. Dolphin

    Dolphin Senior Member

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    Thanks from me too.

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