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Dr. Nancy Klimas talk Feb.24

Discussion in 'Upcoming ME/CFS Events' started by Sing, Feb 23, 2015.

  1. Sing

    Sing Senior Member

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    From 2-3 pm Eastern time Tuesday, Feb. 24, 2015, Dr. Klimas will be giving a talk. See www.PandoraORG.net for details. Click on Latest News, a link near the top left, to register and get access.
     
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  2. Wally

    Wally Senior Member

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    @Sing - I clicked on the link and nothing about a talk given by Dr. Klimas appeared on the screen???
     
  3. Sing

    Sing Senior Member

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    I registered a while ago through PandoraOrg.net. They sent me a link through email and also a phone number with pin and said not to share the link. I see the information but maybe an unregistered person would not? I do not know what to say. It could be I paid $20 or something. I don't recall. Here is what I see when I click on Latest News on PandoraOrg's site:

    Reminder: Tomorrow 2 PM EST is the webinar with Dr. Nancy Klimas - Institute for Neuroimmune Research, Nova Southeastern. This will the second in our Research Report webinar series to fund research for a cure. You can register here - http://bit.ly/1unh9Wz

    Registration
    By clicking this button, you submit your information to the webinar organizer, who will use it to communicate with you regarding this event and their other services.
     
  4. Wally

    Wally Senior Member

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    @Sing,
    Thanks for the info. Not sure if this is different from the Nova webinar I signed up for and watched a week ago. I will investigative further.
     
  5. Sing

    Sing Senior Member

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    Starting in 12 minutes
     
  6. Scarecrow

    Scarecrow Revolting Peasant

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    In discussing advocacy efforts to gain more funding, Dr Klimas encouraged us to refer to ourselves as 'the under served'. (Not to be confused with the undeserved, which she kept nearly stumbling into!)

    She also said that 84% of people with ME/CFS don't have a diagnosis and that the other 16% had a hell of a road to get care.
     
    Last edited: Feb 24, 2015
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  7. Sing

    Sing Senior Member

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    Pandora Org said that in the next few days a link to this talk will be posted on their Facebook page and it will be added to their youtube videos.
     
  8. SpecialK82

    SpecialK82 Ohio, USA

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    I had to miss it - does anyone have a recap or any new info?
     
  9. Scarecrow

    Scarecrow Revolting Peasant

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    There were no new revelations that I caught. Dr Klimas gave an overview of the Institute for Neuro Immune Medicine at NSU. She described the staff structure and summarised some of the active and recent trials.

    What was interesting for me was that the recent recruitment of males with ME/CFS and females with GWI complements the groups they have already studied (females with ME/CFS and males with GWI). They also have males and females with fibromyalgia.

    So they have immune profiles for all these groups and can compare the two sexes within a single disease or the same sex across diseases.
     
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  10. Sing

    Sing Senior Member

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    At the end she was asked if she could recommend one treatment for ME/CFS, what would it be? She said PACING, first of all. But in terms of a drug/supplement, she said Immunovir which is not available in the US. This can easily be googled for more information. She recommends starting with a low dose. Also using pulsing. At first there may be side effects then it makes people feel better. Immunovir is one of the things which enhance NK cell activity.
     
  11. lnester7

    lnester7 Seven

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    To all, the battle with NK is not an easy one, it took me 2 years on treatment to see them come up. So do not go try immunovir and think 3 months and you will know.
    2) I felt HORRIBLE sometimes on it, Sotimes GREAT and is not without challenges, I got so acid in it that every hole in my body got split open: Down both ends, eyes, end of lips. Until I realized I cannot tolerate more than 3 a day. I just get too acidic otherwise, and you have to watch your uric acid every 3 months or you can develop gout.
    3) Pulsing every 6 months sometimes is detrimental, and other times I felt better off of it.

    I am still on it. But I think the LDN 4.5mg made it to finally raise NKs.
     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    Dr Nancy Klimas Institute for Neuroimmune Research, Nova Southeastern 2 24 15 2 00 PM
     
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  13. alex3619

    alex3619 Senior Member

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    If she is nearly stumbling, give a thought to most of us ... we will stumble with it. Its probably a term we might want to find an alternative for.

    PS The reason Klimas says to use this is not in general language, its for application for specific sources of funding.

    This video gives a good glimpse into the issues our scientists face with funding and approval. Nancy has had a potential treatment for five years and has had funding refused eight times.
     
    Last edited: Feb 25, 2015
  14. alex3619

    alex3619 Senior Member

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    In my current opinion Klimas is probably right that immune and allergy sensitivity is approaching being treatable. I do not think this is the case with chemical sensitivities. The few classes of chemicals we kind of understand show the problem is more biochemical ... its direct interference with enzymes and metabolic regulation etc.
     
  15. halcyon

    halcyon Senior Member

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    Has Dr. Klimas formally published on those IL-1 findings?
     

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