1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who...
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Watch US CFSAC meeting NOW!

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 11, 2010.

  1. Hope123

    Hope123 Senior Member

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    The US CFS Advisory Committee meetings begin tomorrow and will run everyday through Oct. 14.

    Although people have mentioned it on these boards, I thought it would be helpful to re-post here to remind people who can to watch the meetings. Aside from getting to hear and see the major players (scientists, government officials, advocates, etc.), the US government counts number of views as a sign of interest to continue broadcasting and of general interest in CFS as well.

    1. The meetings run from 8:30 AM to about 5:00 PM US Eastern Standard Time ("America/ New York") each day. Here is a time converter to help out:

    http://www.timezoneconverter.com/

    2. If you have never watched the videos before, you may need to download (free) the software:
    http://videocast.nih.gov/faq/#software

    3. Click on the right-sided column on the link "videocast" under "spotlight" at the right time and video should begin. You can pop in and out during the meeting times.

    http://www.hhs.gov/advcomcfs/

    4. If you can't watch all or some of it, it should be archived online after a few days. Consider running the video tomorrow part of the time even if you can't watch as it might still be counted under "live views".
  2. urbantravels

    urbantravels disjecta membra

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    Thanks for the reminder! As much as I'd love to watch every second of the science day live...well, 8:30 AM is already a tough hour for me...but on West Coast time it'll be starting at 5:30 AM. AIEEEEEEEEEEEEEE

    I hope someone will be liveblogging and/or tweeting the heck out of this. Of course I'll have the opportunity to watch archived video later, but I'm always eager for any scrap of new information as soon as I can get it!
  3. citybug

    citybug Senior Member

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    Anybody who is there please try to get good pictures, with high pixels in case we can use them, or send to newspapers so they don't use their lame photos.
  4. Frank

    Frank Senior Member

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    Europe
  5. Rrrr

    Rrrr Senior Member

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    Where are we discussing this as it happens?
  6. OneWaySurvival

    OneWaySurvival

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    Good question...I've been wondering the same. We can discuss here until somebody moves it to the XMRV "Events" section.

    First comment: Arrgh! They've changed the webcast style. I can't pause the video and it's on a tiny screen (it's blurry when I right click and choose "Zoom", but at least it's bigger that way). Anyway, this will be nearly impossible to follow over the next few days when you can't pause and back up the video.

    Second comment: Le Grice is starting on XMRV now! 30 minutes early!
  7. Hope123

    Hope123 Senior Member

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    Glaser's talk is annoying enough to me this morning (stress, stress, and more stress...........) that I will have to re-watch it to get the point again. It's covering old ground with studies by Buchwald who tends to emphasize "chronic fatigue" rather than CFS. Also, his slides are too long and need to have bullet points; hard to focus already with the CFS.

    I missed Klimas' talk.

    I hope we get something new out of these talks -- even if a better putting together of prior research. Hope it's not a pat on the head and a "there, there, it isn't too bad.........don't worry" patronizing type of session.
  8. Rrrr

    Rrrr Senior Member

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    klimas's talk was FANTASTIC!!! she nails it. she listed immunological marker after immunological marker that is clearly seen in Gulf War Syndrome and CFS. she had great graphs and graphics and she clearly has a wonderful computer model person who can take the data to whole new level for us. she also said she just got (2 wks ago) a good sized NIH grant to continue these exact same immunological marker studies in CFS patients.

    crap, i missed the very beginning of the current speaker, dr stuart legrice. i started watching him just as he finished saying something about the recent NIH-organized XMRV 2 day workshop.

    he said something like no matter what the press says, he knew from being at that meeting that there WAS or WAS NOT controversy in the minds of virologists. which did he say???

    did anyone catch what he said???
  9. Hope123

    Hope123 Senior Member

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    Thanks, Rrrr! I'll have to catch Klimas on the rebound.

    I just wrote CFSAC about getting the resolution on the video better. I'll try calling. This is important since so many of us cannot get to the meeting. Contact info:

    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    Office of the Assistant Secretary for Health
    U.S. Department of Health and Human Services
    Hubert H. Humphrey Building, Room 712E
    200 Independence Avenue SW.
    Washington, DC 20201
    (202) 690-7650 (Voice)
    (202) 401-4005 (FAX)
    cfsac@hhs.gov (Email)
  10. Berthe

    Berthe Senior Member

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    near Antwerp
    Klimas was great. Glaser made also a point about his viral protens. But what the heck with the third person, Grice? Is he a clone of John Coffin? I crashed during his talk. It's five p.m. here and I'm exhausted. I really loved the two speakers, but dislike this last guy. He made me nauseous. Does anyone else experience the same, or am I wrong? Is it because I'm crashed?

    Love,
    Berthe

    http://www.onwilliglchaam.blogspot.com
  11. Hope123

    Hope123 Senior Member

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    FYI, if you hit "cc" on the lower left-hand corner, you can get close captioning.
  12. Hope123

    Hope123 Senior Member

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    The difficulty with this year's broadcast is, per NIH video services guy I spoke to, CFSAC is using an outside contractor called Granicus.

    So, for your questions re: resolution, call Granicus:

    Business Hours Support


    (5:00am – 6:00pm PST)
    Phone: 415-357-3618
    Toll Free: 877-889-5495
    After Hours: 415-655-2414
    customercare@granicus.com

    BTW, the NIH guy told me that he had already received several e-mails this AM at the meeting beginning re: not getting the video feed but couldn't do much with it since at least this broadcast was contracted out this time.
  13. OneWaySurvival

    OneWaySurvival

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    Next up at 11:15 ET: Q&A discussion on first 3 topics.

    The Le Grice talk (3rd speaker) was a major bummer for me. It got a little better at the end when he mentioned the future studies and all they have planned for exploring XMRV...but the first 20 minutes was a rather discouraging recap of the XMRV conference and his takeaways were all about how there is no consensus on XMRV. It almost felt like he was discrediting every positive study out there so far. He went on and on about the possibility of contamination, and how scientists need to take a "serious look at contamination" and how easy it is for tiny mouse DNA fragments to be detected by these ultra-sensitive methods.

    He said that despite media reports, there is "no frenzy among scientists" about XMRV. Whatever that means. He said there are disparate results, but no "frenzy."

    Another thing that was upsetting was how he highlighted several of his points in RED font (almost like he was slapping us patients in the face with them). Points such as:
    "the Lo paper and the Lombardi paper have to be viewed as separate phenomena" (because Lo only found fragments of MLVs - no infectious virus found - and Lombardi found whole, infectious XMRV)

    "Lo paper found zero infectious virus, only fragments"

    "gammaretrovirus is lifelong"

    "Antiretrovirals only stop replication, they do nothing to repair existing damage"

    More studies needed to rule out contamination, etc. etc. etc.

    I felt all the wind coming out of my sails listening to his talk, and imagined another year of waiting for an agreed upon diagnostic test for XMRV, then several more years of waiting for targeted treatments. Very discouraging, but I don't think he's a bad guy. Just pointing out how much discrepancy is out there among researchers. I hope they start talking about the immense need for funding to get this straightened out ASAP!
  14. urbantravels

    urbantravels disjecta membra

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    Nancy Klimas is awesome. Can we clone her and have her in clinics across the US to be our doctor, and then have a whole other gang of her doing bench research, and then have another team going around to medical conferences and setting the scientific community straight??
  15. Hope123

    Hope123 Senior Member

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    Granicus has called me back and said CFSAC staff didn't send them slides for the talks so they were unable to put them up on the right-handed side of the screen (where you see the agenda). The video usually can't capture what is on slides as it is "filming a film."

    I pass this message on to CFSAC staff and encourage others to do the same.
  16. urbantravels

    urbantravels disjecta membra

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    I didn't catch the name of the patient who asked the question, Why on earth don't we just use the Canadian Consensus definition instead of having "panels of doctors" verify who is a bona fide CFS patient?

    THANK YOU FOR ASKING THE VERY QUESTION I WOULD HAVE ASKED
  17. jspotila

    jspotila Senior Member

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    I believe that was Dr. Joan Grobstein. I may have the spelling wrong.
  18. parvofighter

    parvofighter Senior Member

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    Canada
    "Close" Transcription of this morning @ CFSAC Science day on XMRV GLobal Action

    I started just making notes for myself - then realized that I was getting most of this down with these hairy paws. Still don't know what possessed me... the morning session of CFSAC's Science Day is transcribed. You can check it out in 2 parts at XMRV Global Action here: http://www.facebook.com/pages/XMRV-Global-Action/216740433250

    Please feel free to move this post if there's a better place for it.

    Parvo... [​IMG]
  19. jspotila

    jspotila Senior Member

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    Anyone having trouble with video feed right now?
  20. George

    George waitin' fer rabbits

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    South Texas
    Yep it's coming up that it's over.

    Nice hair P-Dog. (grins)

    upsa-daisy it's baccckkkk.

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