#86~ CFSAC "Computer Act-Up" Please....

OH~ Can you PLEASE do us a HUGE Favor????
YES, this applies to ALL of you Around the World

Many ME/CFS folks "Around the World" have been.... shall I say 

"a bit MORE Than UPSET" at the Lack of Topics included in the 

Proposed Agenda  AND some of the topics INCLUDED in the Agenda...

For ALL of the TALKING and WRITING for 25 years this Agenda
seems to be nothing more than a Rubber Stamp of the CDC revised website.

This is NOT "to be tolerated" as we have been FED UP with the CDC
and their cover-up, their belittling naming of this illness causing mass WORLD Confusion, their INtentional Continued use of the WRONG Definition of this illness and thereby dummying down the cohort they select to test with..

Their "Can't Detect C*^p"  tunnel-vision is NOT to be Tolerated, esp. AFTER they had been sent Active LIVE Strains of the the XMRV Retrovirus+"Explicit Instructions for Detection" 
back in Oct 2009.
What did Reeves DO with them? 

Since MOST of us ARE "really" too  sick to do a "Mass March" on the CDC Building.

And we doubt SERIOUSLY that the CAA will do anything EQUALLY effective to Bring the MASS MEDIA PR attention to OUR Plight that 

they "claim" to represent.

It is now time for us to do the one thing we CAN DO.......

"Wage a Computer LOG-IN"  of the CFSAC meetings ~  ALL 3 days.....

Log-in and BE Counted !!!!

We are Trying REALLY Hard for 3 days or as much as possible
to "get the WORD OUT" if you can get as many 
members/friends/family as Possible, that would be GREAT !
even if they will be sleeping during this time....
to "Log-in their computer" to the 3 days of the CFSAC meetings
covered LIVE via webcast..and just "LET IT RUN"........
they can "turn down the volume" to sleep even....
as these WILL be captured and put on Youtube shortly after
and then will be MUCH easier to View..

Cuz we VERY MUCH NEED people to "Log-in"

as "the Gov't COUNTS the # of people logged-in"

and we are wanting a HUGE Number to SHOW

them we ARE Paying ATTENTION

to what they are doing... OK??? Pretty Please...

You will have to convert the date/time but it's
Oct 12, 13, 14- 8:30am-5pm EDT in Wash DC..
Info schedule and "click links" on the Right of THIS page...
http://www.hhs.gov/advcomcfs/index.html

"PLEASE" *VERY IMPORTANT*
Make SURE you EACH go to the website for Real Player
http://www.realplayer.com ASAP
and have the MOST RECENT Version installed
"AHEAD of Time and have it installed"~ OK?
It is NEEDED to watch and log in.~

Thx and ♥Hugs♥ and pass this to as many people as you can
around the WORLD, as THIS is the 1st Meeting AFTER the XMRV Workshop
and Day 1 is a Science Day and Day 2 + 3 are
the meetings w/public input by folks you will probably know ♥

But the AGENDA has us REALLY UPSET !!!
And This is "But one" of our ways of Registering" with them

So they CAN SEE that we ARE Paying ATTENTION

and will NOT PUT up with any CDC- BS
they try to use that on us.. capiche?

 

 Tell Everyone to Mark Their Calendars and HELP US in

THIS Cause. Pretty Please..

We ARE Trying to get a MINIMUM of 1,000 computers "LOGGED-IN"

Just make SURE you Download the Most Current Version of Real Player NOW..
and  SHARE this with your friends and whomever you think WILL HEP US...
and  we will send you out a reminder a few days before the Actual time  to 
Log-In.. cuz you can NOT log in very much in advance..OK?

You CAN "Commit" Right NOW to Helping us by  making sure you have the

Latest version of "Real Player" and are "READY TO GO !!!"

Thanks in advance for ALL of your HELP.. to Help US BE Counted...
We will NOT Be INVisible ANY LONGER...period.

Help us Stand UP 2ME

Help us Stand UP 2CFS

Help us Stand UP 2 the CDC

Help us stand up to this Crime Against Humanity.

Help us by Agreeing to "LOG-IN"

It's FREE, No PEM afterwards, and you WILL have DONE somthing to Help US BE COUNTED.

Thank You in Advance and Bless you.♥♥♥


ShareThis

#62~ NEW Members of the CFSAC, brief UPdate

As you ALL know by now the CFSAC will be meeting on May 10th, 2010 Wash DC
and it will be Open to the public and will be webcast.  http://videocast.nih.gov. 

Realplayer is required to view the webcast, and 
I "HIGHLY Suggest" you download it at least the day BEFORE and Make sure it works OK...
The meeting will also be archived for future viewing on the CFSAC website.

I have posted the hours and agenda in a previous post. 

Here's ANOTHER Testimony submitted  for the meeting:
The CFIDS Association submitted a 5-page written statement:
http://www.cfids.org/advocacy/cfsac-testimony042610.pdf. 
CEO Kim McCleary will attend the meeting and will present an abbreviated
form ( aka 3 minutes) of these recommendations during the public testimony.

*******************************************
NEW CFSAC Committee Members:

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)

Wow...5 NEW Members as of this next meeting Date?
I wonder who they are and what their credentials are?
And how much of the past CFSAC History they are familiar with? A little written background would be appreciated since they are Representing us, ya know?
A link with a brief Bio "would have been" REALLY Nice ♥
Do any of you know who these folks are? P_lease let us know if you do...OK? Thx


Please remember to get your Blue Ribbon for your online avatar so HELP Raise Awareness for ME/CFS/XAND ~ ASAP ♥
 

#26~ THIS Thurs & Fri-Watch CFSAC meeting LIVE if you can

PLEASE Spread This Info FAR & Wide
Around the world... OK?

to get as many people as you can~
to get those computers online watching.
..and to HEAR what Dr. Peterson,
(he is alotted ONE HOUR) 
Dr Bell (alotted 30 mins)
and the CFIDS Assoc has to say during
their 5 min segment during the
"Public Comment" segment....

BLOWS my mind that CAA only is
relegated to a 5 mins of the Public
Comment section, as THEY are
supposed to be OUR Voice...
They sure have alot of clout, huh? NOT

OUR computers turned ON and tuned IN
will SPEAK a LOT LOUDER to the NIH..
So PLEASE turn every computer on 
that you can...OK?

Please watch if you CAN or even replay after
I will add the link for a time zone convertor
down below for your reference.

For those who won't be attending the
CFSAC meeting, be sure to tune in to
the LIVE webcast of the CFSAC meeting
on October 29th and 30th at the following
links:

The schedule for the 2 day event is
located here: THIS Thursday & Friday

2 day Event Schedule

Day 1
*Day 1 LIVE online webcast*

Day 2
*Day 2 LIVE online webcast*

*The number of computers "logging on" 
and watching will be counted by the NIH. 

Let's make those figures 

count for something!*

For those who can't watch live,
archived videos will be available at:

Past Events

The meeting is taking place in
Washington D.C. so that is EDT
if you are in the USA.
If you are elsewhere around the
world we will NOT be changing back
from Daylight Saving Time this year
until Nov 1st, so Wash DC will still be
- 4hr GMT, so you can calculate
from there...

Time & Day World Clock

PLEASE Help us Blow their viewer
Numbers OFF the charts 
THIS year, OK?

Just so you Understand.....
This is a committee that is a Branch
of the USA Gov.~Heath & Human Services
Dept so this is REALLY Important to US
to get their ATTENTION... capiche?

If we can get on the Radar of  

HHS Secretary Kathleen Sebelius

that would be a "real coup."

The "squeaky wheel" gets the grease..
Help us show them we NEED the Grease
THIS YEAR like NEVER Before...
Let's as they say...
"Strike while the iron is HOT."
If not NOW ~ WHEN ???

We've been HERE since before AIDS and
we'll be HERE after the Swine Flu...
Let's USE the Internet and 
show the Power of a Cause 
whose Time HAS Come.

28 million Voices will 

NOT be Silent Anymore.

Thanks for tuning in and Turning ON ;-)
Stay UNITED and 
Let's TURN the Volume UP.

GO Team~ XAND ?
accepting slogans now ;-)