Covering It Live! Phoenix Rising Covers the Federal Advisory Committee Meeting

June 11, 2012

Posted by Cort Johnson

Join Phoenix Rising as we cover the June 13th, 14th CFSAC meeting live.

The federal advisory committee on chronic fatigue syndrome (CFSAC) meets twice a year to propose recommendations and interview and prod  federal officials to do more to meet the enormous needs of the chronic fatigue syndrome community.

Join Phoenix Rising as we cover the two-day event (June 13th, 14th 9am-5pm EST) live with commentary and the opportunity for you to join in and give your impressions and views as the event unfolds.

The meeting provides a rare public view of what the NIH, CDC and FDA and others are doing (or not doing) to provide answers for the 1 million or so Americans with ME/CFS.  You’ll see the heads of the CDC and NIH CFS programs talking about their respective programs, you’ll see passionate presentations from advocates seeking more support, you’ll see bureaucrats saying all the right things (but often doing nothing) and this year you’ll see presentations from patient organizations as they make their pitch to be included on the committee next year.

In this meeting we’ll see three new members replace three outstanding past members (Dr. Klimas, Dr. Jason and Dr. Snell) and learn how far the CDC will go in adjusting their ‘Toolkit’ on CFS. This meeting also includes a focus on childhood chronic fatigue syndrome with a presentation from noted Johns Hopkins researcher and physician Dr. Peter Rowe and a panel discussion devoted to figuring out how the federal govt can do more in this area.  Look for Speak Up About ME (SUAM) – an organization devoted to supporting young people with ME/CFS – to make as much of a splash as it can as it brings young people from across the country to testify for more federal support.

After the reps of the federal agencies testify about their respective programs look for an intriguing discussion on how to move towards a consensus definition for CFS.

Join in as we analyse and comment on what the biggest and arguably the most important ME/CFS programs on the planet are doing.

Day 1 (13 Jun)

 

Day 2 (14 Jun)

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16 comments

{ 16 comments… read them below or add one }

Bob June 12, 2012 at 2:40 pm

I've been dropping by the forum for updates all day…
And I wondered why there weren't any…

I've just realised I'm a day early! :confused:

Ember June 12, 2012 at 5:47 pm


Bob

I've been dropping by the forum for updates all day…
And I wondered why there weren't any…

I've just realised I'm a day early! :confused:

I guess that makes you even, Bob!;)

Bob

I've only just realised the iiME conference was today. I thought it was on Saturday. :sleep:
Has anyone come across any more sources of info, such as twitter feeds, blogs, or forum threads?

Bob June 12, 2012 at 6:30 pm

Ha! Ember! How funny! If a little embarrassing! :cool:

I think there's a pattern forming here isn't there! :sleep:

Maybe I should invest in a calender, and I should keep it next to my computer!!! :confused:

:)

CJB June 13, 2012 at 11:06 am

We're live folks. The meeting convened at 9am EST and is currently on lunch break. Please join our live coverage feed. Follow the links at the top of the page.

roxie60 June 13, 2012 at 4:16 pm

does anone have a live link to the actual meeting? I think I found the link. Someone said it would be helpful for us to login somewhere so 'the gubbermint' knows we care, is the link the th live thread the plac we are suppose to login and be heard/recognized?

Mark June 13, 2012 at 9:15 pm

Here's where you can view the coverage as a live video stream:
http://www.hhs.gov/live/

Agenda:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20120613_agenda.html

Roster:
http://www.hhs.gov/advcomcfs/roster/index.html

I've edited our coverage from day 1 to add some extra info and a summary at the end, plus captions for most of the screenshots. Probably easiest to read through in the larger window on the forum page here:
http://forums.phoenixrising.me/index.php?pages/CoveritLive1/

Our Day 2 coverage will appear here:
http://forums.phoenixrising.me/index.php?pages/CoveritLive2/

You can email us with your comments to be included in our commentary.

Sasha June 14, 2012 at 2:35 am

Thanks to everybody for the coverage – I watched quite a bit of the feed but find it difficult to take in verbal stuff when it's fast so the soundbite summaries were extremely helpful.

taniaaust1 June 14, 2012 at 7:23 am

I really really want to watch it, but my dial up connection cant handle the live stream so I cant hear it (Im getting it about one word every 30 seconds) and picture arent moving. Is there anywhere we can just listen to it without the video? maybe my computer could handle that.

TheMoonIsBlue June 14, 2012 at 7:33 am

I can not watch it on my ipad.

Anyone else?

taniaaust1 June 14, 2012 at 8:09 am


TheMoonIsBlue

I can not watch it on my ipad.

Anyone else?

im now watching the messages being done on it as they are posted (as that is the only thing I can get up,, it automatically updates the messages as they are posted ) http://forums.phoenixrising.me/index.php?pages/CoveritLive2/

Thank you Cort and PR for setting that up for us

waiting June 14, 2012 at 11:21 am


TheMoonIsBlue

I can not watch it on my ipad.

Anyone else?

You won't be able to watch CFSAC meeting on iPad because they're livestreaming using Adobe Flash Player and that won't run on an iPad (longstanding dispute between Apple and Adobe).

TheMoonIsBlue June 14, 2012 at 12:41 pm


waiting

You won't be able to watch CFSAC meeting on iPad because they're livestreaming using Adobe Flash Player and that won't run on an iPad (longstanding dispute between Apple and Adobe).

I know….it is so annoying!

SpecialK82 June 14, 2012 at 6:02 pm

Thanks to all the CoverItLive commentators – you guys were great!

taniaaust1 June 15, 2012 at 12:54 am

I too want to say a big thanks to all those who spoke up at this talk. So many great speakers telling it how it is

Denise June 16, 2012 at 4:12 pm

Thank you to everyone who Covered It Live!
Thank you to everyone who watched (or ran) the LiveStream!
We appreciate you!

WillowJ June 16, 2012 at 9:02 pm

I also want to say thanks to everyone who spoke, watched, worked on Cover it Live!, Tweeted, etc., and provided other support to those who did these things and to the community as a whole.

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