FW: [CO-CURE] NOT,ACT: CFSAC: getting noticed & meeting options June 13-14

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From: ME/CFS and Fibromyalgia Information Exchange

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On Behalf Of Janelle WileySent: 12 June 2012 10:11To:

CO-CURE@...: [CO-CURE] NOT,ACT: CFSAC: getting noticed &

meeting options June13-14

The US Department of Health and Human Services CFS Advisory Committee willbe

meeting June 13-14 (Wednesday and Thursday) to make recommendations tothe

Secretary of Health and Human Services, Kathleen Sebelius.

Video webcasting has been re-instituted for this meeting after being takenaway

previously. The US government will be counting the number of computersrequesting

the video feed. Please consider displaying the video at somepoint even if you're

not able to listen/watch, just to signal to thegovernment that this committee,

the webcasting, and hopefully the committeerecommendations, are important. Maybe

they'll even notice thatout-of-country people are interested (anything done by

any one healthauthority affects us all to some extent).

Why should we participate when they never listen? If nothing else, itcreates a

record which can be used for accountability purposes. But there'salways a hope

that with more and more new and interesting studies, thetipping point will

arrive. The scientific weight is building all the time,and that day will come,

when the pressure of this knowledge outweighs theneed to protect old bad

decisions and current entrenched interests.

If webcasting is not the best way for you to listen or if the signal

isdisrupted--or if you, as is likely for all of us, miss some parts--there

areother options for getting information about the meeting. A group will

beproviding live coverage at Phoenix Rising (which will incorporate Tweetsfrom

Marly Silverman (@pandoraorg and @OneAgent4Change) and whomever else wecan find

who is Tweeting--the hashtag for CFSAC is #CFSAC, and as far as Ican tell we'll

be using that for this event as well).

Cover it Live! will be here (and you can already find a link to view theCFSAC

agenda, or sign up to get an email

reminder):http://phoenixrising.me/archives/11451

Janelle@janwly on Twitter_______The PACE trial announced that status quo was

great for ME/CFS, but is thisconclusion appropriate? See an analysis

here:http://evaluatingpace.phoenixrising.me/homepageanim.html

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