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Dr Bell XMRV lecture Jan 15th (Santa Ana)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by anne_likes_red, Jan 4, 2010.

  1. anne_likes_red

    anne_likes_red Senior Member

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    Whittemore Peterson Institute: "Dr. Bell will give a free lecture on XMRV, fibromyalgia and CFS/ME to patients, families or anyone interested in learning more to support friends and family memembers January 15, at 6:30 p.m. at the LDS Church Building, 9802 Newport Blvd, Santa Ana 92705 (1 mile south of Chapman on Newport Blvd.)"



    From the WPI facebook page earlier today. Apologies if already posted.
  2. wornout

    wornout Guest

    I saw this and thought I should post it here. I would love to go. Hopefully someone from here will go and update us on what was said

    Please note change of venue for lecture:

    FOR IMMEDIATE RELEASE

    Contact: Corin Ramos, APR 714-970-2268

    "XMRV retrovirus and Chronic Fatigue Syndrome, ME (Myalgic Encephalomyelitis), Fibromyalgia and aggressive prostate cancer"

    WHAT: The Barborka Family Presents a Lecture by David S. Bell, M.D.

    WHEN: Friday, January 15, 2010 - 6:30 pm - 7:30 pm

    WHERE: Red Hill Lutheran Church 13200 Red Hill Avenue Tustin, CA 92782

    COST: Free
  3. SeaShel

    SeaShel Senior Member

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    Dr Bell's Talk in CA last night

    My husband is in CA for work right now and went Dr Bell's XMRV talk last night.

    He took pages of notes for me, but it was taped so I imagine it will available to us soon.

    What I wanted to share with everyone is that hubby said there were actually a few doctors in the audience, not just pwc's and family. Yay! I don't think I've ever had a doc that could have been bothered to go.

    I think it was eye opening for hubby to hear all Dr Bell had to say about the craziness that goes on in our bodies. Not that he doesn't believe me, but hearing it in a doctor's words is a different animal.

    Wishing you all a functional and pain free day - (I know, if only!)

    Shelley
  4. Alice Band

    Alice Band PWME - ME by Ramsay

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    Thank you Shelly for letting us know. Especially about all the doctors. Hope that your husband got some extra understanding as well. Very kind of him to take all the notes. Sounds like you have a great hubby there.
  5. starryeyes

    starryeyes Senior Member

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    That's great Shel, thanks for letting us know. I'm glad you've got a supportive husband. Dr. Bell is one of the finest CFS Specialists we've got. :sofa:
  6. anne_likes_red

    anne_likes_red Senior Member

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    Thanks Shelly.

    Great to hear there were doctors there. I imagine Dr Bell is well respected among his peers and not just the ME/CFS patient community.
    Glad to know it was taped :Retro smile:
    Thanks for the report...your hubby is a star.:victory::victory:
  7. dmarie4301

    dmarie4301 Guest

    Dr. Bell's lecture on 1-15-2010

    Does anyone know if there is a transcript or video up yet on this lecture???

    Thanks
  8. Dolphin

    Dolphin Senior Member

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  9. dmarie4301

    dmarie4301 Guest

    Thanks!

    Thanks for finding the link to the info. I heard so much about his lecture, but then no follow up. I was hoping it would be on youtube, but this will do.

    Donna:D
  10. FernRhizome

    FernRhizome Senior Member

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    I think Dr. Bell's lecture was supposed to be posted to the WPI website at some point. Or was I wrong about that? I thought perhaps they decided to hold off on posting it with Dr. Mikovits talk and maybe once everyone's had a chance to hear her video they will put Dr. Bell's up next? ~FernRhizome
  11. anne_likes_red

    anne_likes_red Senior Member

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  12. rebecca1995

    rebecca1995 Apple, anyone?

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    Thanks for letting us know, Anne! Now we can determine the condition of his socks for ourselves! :D
  13. spindrift

    spindrift Plays With Voodoo Dollies

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    Thank you for posting :)
  14. anne_likes_red

    anne_likes_red Senior Member

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    Pardon??? :eek:

    LOL. I've obviously missed an entire conversation somewhere! (Probably just as well if it involves socks. I'm always losing them.)
  15. Dolphin

    Dolphin Senior Member

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    Thanks Anne.
    Now all we need is a transcript :Retro smile:
    (Not essential - I just prefer transcripts to videos as if I watch videos, I tend to want to take notes, which is tiring, etc)
  16. Kati

    Kati Patient in training

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    Wow, great thanks to the loving family that recorded the presentation and for Dr Bell's eloquent lecture. I am tempted to send the link to some of the health care team that has the pleasure :)Retro eek:;):eek::Sign Good one::Sign Please::D) to work with me on this....
  17. gracenote

    gracenote All shall be well . . .

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    Thanks anne likes red for posting this.

    I'm watching Dr. Bell's lecture right now. He is very understandable and would be easy for someone to transcribe. I'd like to help tomk but unfortunately I can't do it. I think his lecture is worth watching.
  18. Dolphin

    Dolphin Senior Member

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    Thanks Gracenote.

    I have the notes I posted earlier in the thread (from somebody else of course) http://www.chronicfatiguetreatments.com/wordpress/treatments/xmrv-dr-david-bell , so I'll survive without a transcript.

    I've been amazed to see people doing transcripts for other talks here - it's bit like nirvana (of a sort)!
  19. fds66

    fds66 Senior Member

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    I will have a go at transcribing the first part later and see how far I get. Can't do the whole thing - too much. Will post up later what I've managed to do.
  20. fds66

    fds66 Senior Member

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    Made a start on the lecture. From the beginning to 8:21. Need to stop for a while now. Might do some more after lunch if I'm up for it. Will post to let you know I am doing that so we don't get duplication.

    Lecture by Dr David Bell

    The Barborka Family presents a lecture by Dr. David S. Bell on the XMRV retrovirus, Chronic Fatigue Syndrome, Fibromyalgia, ME (Myalgic Encephalomyelitis) and Aggressive Prostate Cancer. The lecture was held in Tustin, CA on Jan.. 15th 2010.

    http://vimeo.com/9051294

    Well thank you very much, it’s a great pleasure to be here. We always try to find some place to go in January and February from upstate New York . This is a wonderful place.

    Let’s see if we can get our slides clicking here. OK, so I have to turn this on. Ah there we are.

    OK, it’s always a bit of a mystery. I’d like to keep this informal and then after about 50 minutes we’ll open it up for questions and answers and any question is OK. There’s no question that’s silly or anything like that and I enjoy a huge variety of questions. But what I’m going to go through is mainly the new developments related to this virus XMRV. Before I start I need to know is there anybody here who really doesn’t have any experience with Chronic Fatigue Syndrome and needs some education about the basics. So everybody’s a veteran – is that right?

    It’s really interesting because many of the patients with Chronic Fatigue Syndrome go into their doctor and say “Well I’ve brought you this latest paper on the cytokines that’s been published in this journal“ and their family doctor has no idea what a cytokine is. So many people with Chronic Fatigue Syndrome are quite sophisticated in what they already understand in terms of what this illness is.

    So I’m going to touch very briefly on some of the basics because we’ll be coming back to it.

    The current diagnostic criteria for Chronic Fatigue Syndrome is really quite simple. Even though on the internet people argue about it daily now for the past 25 years it’s really very simple. The simplicity is that this illness restricts your activity. They used to say that you have only 50% of your normal activity. Some people now would say how would you measure 50% of activity – it almost doesn’t matter. In terms of what normal activity is, this illness restricts it.

    In addition there are 8 very common symptoms and you have to have 4 to meet the CDC criteria and those symptoms are listed right up here.

    And then the third part is you have to have no obvious explanation for the fatigue and the other symptoms. So that it’s really quite simple. Someone comes into the office and their chart is this thick and you have no clue of what’s going on they probably have Chronic Fatigue Syndrome. Those were the first criteria I put out 25 year ago and I think that they are still quite accurate.

    A lot of people with Chronic Fatigue Syndrome get enormous numbers of tests and this costs a huge amount of money and those tests in general are perfectly normal. This is misinterpreted by family physicians and specialists to mean that there’s no disease present and that’s a misinterpretation and we’ll be coming back to that over and over again. Just because your standard laboratory tests are normal does not mean that there’s no disease present.

    Now the fatigue of Chronic Fatigue Syndrome, it’s also called ME or Myalgic Encephalomyelitis, and the fatigue of fibromyalgia as well is not a true fatigue. The fatigue as defined is a state of recovery. If you go out and run a marathon you will have fatigue and that is the process of recovery from that exertion. And that’s exactly what does not happen in this illness. So fatigue is really the wrong word – it was misnamed right from the start.

    In fact…… the fatigue is described as an exhaustion or weakness but the true meaning of it is orthostatic intolerance. What that means is that people are not tolerating the ability to stand upright. So when they are standing upright they are not able to maintain that position. Interestingly enough, most people with this illness when they are walking around say they feel much better than if they are standing still. And one of the tests that we very commonly used in our office is we’d have a person next to the examining table for 5, 10, 15 minutes or half an hour and we called this orthostatic testing and has been described by Dr David Streeten in great detail. And healthy people can stand for an hour. He did his normal values based on 90 healthy people and he had them stand up for an hour without moving. After an hour many of the healthy people were somewhat tired and had achiness in their legs and that’s normal. Patients with Chronic Fatigue Syndrome very rarely make it past 20 minutes and the severity of the illness is almost predictable by how soon it will be before the symptoms become overwhelming and that person become presyncopal. They have orthostatic intolerance and they have to lie down. Their pulse sometimes goes up very high, their blood pressure goes through some changes but this is in general called orthostatic intolerance. And it’s different from the fatigue that is present in 50% of the population.

    It’s not simple tiredness. And it’s not anhedonia. Anhedonia is a psychiatric term which means that you have no motivation to go out and do things. Persons with Chronic Fatigue Syndrome would love to go out and do things but they just physically feel that they can’t do it. So in depression because you are depressed you really don’t want to go and go shopping at the mall, but if you are pushed to do that frequently you feel somewhat better. In Chronic Fatigue Syndrome if you try to go shopping in the mall you actually don’t feel better, you feel worse.

    And it’s not a sleepiness – it’s different from illnesses characterised my sleepiness although a lot of patients will have hypersomnalence, they can sleep for 20 hours a day. In general the milder the illness, the more a person gets good or heavy sleep.

    8:21

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