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Dr. David Bell to Speak in Seattle on June 6th

Discussion in 'Upcoming ME/CFS Events' started by ballard, May 6, 2015.

  1. ballard

    ballard Senior Member

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    Dr. David Bell, noted researcher and clinician, will be speaking in Glaser Auditorium at the Swedish Medical Center, 747 Broadway, Seattle, WA at 2:00 p.m. on Saturday, June 6th. This presentation is titled "Chronic Fatigue Syndrome: What Doctors and Patients Should Know."

    Dr Bell will address: (1) making an accurate diagnosis, (2) the nature of activity limitation in the disease, (3) how low blood volume contributes to the disease, including orthostatic intolerance, low cardiac output and increased venous resistance, (4) the nature of cognitive and neurological symptoms and (5) contributions of immune dysfunction.

    Dr. Bell's expertise on chronic fatigue syndrome derives from extensive clinical practice and research. In addition to numerous medical articles on CFS, his related books include A Doctor's Guide to Chronic Fatigue Syndrome, The Disease of a Thousand Names, and Cellular Hypoxia and Neuro-Immune Fatigue.

    Dr. Bell has served on the board of directors of the International Association of Chronic Fatigue Syndrome and was appointed chairperson of the Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services.

    His address, sponsored by the Seattle CFS Support Group, is a free event and no registration is required. A question and answer opportunity will be included.
     

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  2. Sing

    Sing Senior Member

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    Is anyone planning on going and taking notes, I hope? If there is a recording of this talk, it would be wonderful to have here, as Dr. Bell is one of the most experienced experts we have.
     
  3. Sing

    Sing Senior Member

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    I got the following message back from Jamie Nelson at the Seattle support group. Their address is on the flyer. SeattleCFS-Owner@YahooGroups.com

    "A technician from Swedish Medical Center will be videotaping the talk, and Dr. Bell has given permission for us to put that up online anywhere, so you would be welcome to do so as well, and I'd be happy to get it to you."

    Is there someone here who is technically more competent than I am who can field this for Phoenix Rising?

    Thanks!
     
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  4. dannybex

    dannybex Senior Member

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    @Sing Everyone who went to the talk (or almost everyone) is fried -- especially poor Jamie, but slowly recovering.

    I took some notes and am comparing/combining them with Katrina Berne's, and will try to post something in the next few days.

    Jamie told me the other day that there was some sound issues with the recording so the technician is trying to correct and balance the problem and hopefully the video will be up by the end of the week.

    Will certainly post a link when it's online. The talk was great. If you don't hear anything in a week or so, let me know.
     
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  5. Sing

    Sing Senior Member

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    Thanks so much, Danny! I thought Dr. Bell's talk would be really good, as he has a depth of understanding, a perspective that only a clinician who has worked for years in our field can have.
     
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  6. dannybex

    dannybex Senior Member

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    Yup, and what I found really refreshing was that he wasn't stuck on his own pet theories or protocols -- he was totally open to others ideas and research. That's in part why he's coming out of retirement (in a way*), because he's so encouraged and excited that pieces seem to be coming together lately. In fact his talk really pulled everything together, at least as much as possible. Very user-friendly, especially for new patients and uninformed friends and family.

    *He's not reopening his practice, but is following the latest research and is available for other speaking engagements.
     
    Last edited: Jun 17, 2015
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  7. Strawberry

    Strawberry Senior Member

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    @dannybex were there any doctors in attendance?
     
  8. dannybex

    dannybex Senior Member

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    I'm not sure. There may have been one or two -- but didn't see anyone come up to Dr. Bell after the talk who looked or sounded like a doctor. There were about 50-60+ people in attendance.
     
  9. Sing

    Sing Senior Member

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    I wonder what he said?
     
  10. RL_sparky

    RL_sparky Senior Member

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  11. Strawberry

    Strawberry Senior Member

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    *sigh*

    It looks like the information given is great, but if few to no doctors were in attendance....... *sigh*
     
  12. Sasha

    Sasha Fine, thank you

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  13. Sasha

    Sasha Fine, thank you

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    "Ithaca" may be a reference to Maureen Hansen, who is doing work on the microbiota, but I wasn't aware that anyone was doing fecal implants yet.

    @aimossy, does this ring any bells with you? I know you're well up on this stuff.
     
  14. dannybex

    dannybex Senior Member

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    The info was great. Patients could certainly print it off and bring it to their doctors. He has his email address on the top of the document as well, at least the one posted on facebook.

    I hope to have more 'energy' to add my comments in a day or two. Sorry it's taking me so long...
     
  15. dannybex

    dannybex Senior Member

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    I can say just briefly, that he thought the Dubbo Infection Outcome Study was probably the most important ME/CFS study of the last 2 decades, because it showed that 94% of those infected got well within six weeks, but 6% remained ill (i.e. got ME/CFS) and NONE of them had any sort of psych condition.

    Also, while he wasn't too thrilled with the proposed new name (SEID), he said he's "warming up to it", mainly because it stresses the main key symptom, 'exertion intolerance', which could be ANY sort of exertion, physical or mental, a symptom unique to ME/CFS (or SEID).

    Lastly, he characterized Staci Steven's 2 day exercise tests where one's anaerobic threshold drops 50% of more, as being a 'biomarker' of ME/CFS. In other words, a way to diagnose ME/CFS. (at least that's what my foggy brain recalls.) :)

    more ASAP...
     
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  16. aimossy

    aimossy Senior Member

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    No bells ringing I will have to read that write up when I can.
     
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  17. Sasha

    Sasha Fine, thank you

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    That's literally all he said about it in that person's notes from the session. I think a video is being prepared though - they're fixing the sound and then I think we can all see it.

    I wonder if it's a mistake and it was a reference to the microbiome work they're doing.
     
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  18. aimossy

    aimossy Senior Member

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    I thought this guy was good. Doctors need to be hearing from specialist doctors like this. I think it's time there was ME/CFS clinical management medical textbooks starting to be written. We need this sort of textbook literature in medicine now from the specialists. I mean it's coming very close to it being appropriate with enough research and specialist knowledge to include.
     
    Last edited: Jun 18, 2015
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  19. Sasha

    Sasha Fine, thank you

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    I'm not sure if we can get into the textbooks without clinical trial data.

    It would be good to at least get in there with some evidence that it's an organic disease without psychological aetiology, though.

    There was a depressing survey a while back on the treatment of ME in medical textbooks - I think it was mostly that it wasn't in them.

    What do we need, @Jonathan Edwards?
     
  20. aimossy

    aimossy Senior Member

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    Clinical management for ME/CFS patients isn't just about if there is a drug available @Sasha . It's also about best approaches and best advice for patients. How the doctor should or could help the patient. Some of these clinicians have become quite proficient and see thousands of patients, their knowledge about what works best or is helpful or not needs passed on. They can literally just write one ( I think? - as specialists do) and if its good or helpful for doctors some med schools might add it to their curriculum for reference.

    Chronic Fatigue Syndrome is in medical text books. Latest one I saw it in was in one of my sisters psych books (at med school) and it literally took the mickey out of patients obsession with the name. But I am thinking along the lines of a clinical management text book all on it's own by specialist doctors. I think we are getting close to having something like this accepted and used.
     
    Last edited: Jun 18, 2015
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