#119~ Urgent: November CFSAC concerns:

Occupy the CFSAC via EMAILs ASAP ♥

Subject: Urgent November CFSAC concerns:

a) It has come to our attention and was confirmed that the CFSAC arrangements next month are concerning for a number of reasons, some of which seem to indicate that the government is once again marginalizing people with ME/CFS:

b) Thousands of us have UNITED over the past 2-3 years via watching the CFSAC meetings LIVE online and Sharing the info. Now they are Stating this
"LIVE-Streaming will NOT Occur at the November meeting"...

Please ASK as many of your friends as possible to Join Us and send an Email ASAP so that there will be
"NOT ONE WORD ABOUT US WITHOUT US" !!

This is violating their "accommodation for rehabilitation for people with Disabilities" and their past agreement to LIVE STREAM the Video AND the Audio. Many must listen, many can only watch IN SILENCE and read the text captions.
BOTH ARE VITAL !

This is an URGENT Vital Plea regarding Our knowing what OUR Federally Designated Committee and the attendees are saying about us LIVE !
Please Help PROTECT "OUR RIGHTS"~
"NOT ONE MORE WORD ABOUT US w/o US" !!

They ARE moving it to a Larger Room in another building so more than 50+ ppl can be accommodated, which IS a good thing.

If you have ME/CFS/FM/HGRV  or any NID, Please share this info with EVERYONE YOU KNOW and ask them to Help by sending an email, with the link to this blog.
Here is the Official Notice for the Next CFSAC meeting and they are violating our 508 Rehabilitaion Act  agreement to "stream it LIVE" so we can all SEE + Hear it LIVE !!

CFSAC Bylaws State:

"All materials posted on the CFSAC website shall be 508 Rehabilitation Act compliant to provide equal access to people with disabilities.

To the extent possible, meetings are broadcast over the Internet as real-time streaming video. Meetings "also" will be recorded and archived on the CFSAC website for viewers to watch at their convenience."

In MY book "also" means IN addition to....

The meeting will NOT be broadcasted live on-line like it has the last 2 years. Again, it is not clear why it will not be. Instead it sounds like audio will be available only with possibly video available later on. Certainly, this cannot be for lack of viewship -- Wanda Jones announced that several hundred people watched it live -- nearing 1000 at the May meeting. This is a huge increase as before the videocasts, had less than 100 people usually. CFSAC meetings are near impossible for the majority of ME/CFS patients to attend due to health or financial reasons. It should be noted that many, many NIH and DHHS meetings are videocasted live and probably with a lower number of people watching. The number of testimonies has also gone up over time and we believe this is partly due to patients better understanding what CFSAC is.



"NOT ONE MORE WORD ABOUT US w/o US" !!

© 2011 - John Herd

c)
People who have not presented at the meeting before will be given priority to present. Although this is done prima facie for fairness, it might also mean that people who are knowledgeable/ experienced about ME/CFS and the gov't's history of dealing with it might be shut out from testifying. Does this apply to reps from groups also ?

d)
Please FLOOD her/their inbox with emails
immediately using the layout below to:
Dr. Nancy Lee is the new designated
federal official and her e-mail is:

In the "TO" section:
"Dr. Nancy Lee"
"Dr. Nancy Lee"
and copy that name/address EXACTLY, Promise ?

Then in the "BCC" section: add

Howard Koh ,
Howard Koh ,
Kathleen Sebelius ,
Fancis Collins ,
Dennis Mangan ,
Wanda Jones ,


The last one in the BCC: section~ the one to bodieangels, so we can tabulate how many were actually sent, OK ? ♥ If you want, send a "BCC" to yourself so you can see what it looked like.

Be SURE to use the "quotes" then a Space and the to make the address Correct ♥ with a comma in between each one, OK ?

"NOT ONE MORE WORD ABOUT US w/o US" !!

and for:
"President Obama"

http://www.whitehouse.gov/contact     
(it's a form to prevent spamming)
 
I suggest you create your Letter in a plain text program FIRST ( NOT "Word" ) so you can simply Copy + Paste it into the email. It helps me when I do that.♥

--> Let's SEE if we can get 1,000 emails sent 
                                BY the End of this week, OK ?

d)
Please click "attending" if you Promise to just even send one short email stating some of what we've written here requesting that they STAY Consistent and ask for "NOT ONE WORD ABOUT US WITHOUT US" and that they Accommodate the needs of the Disabled as in the past. Also, Please ASK as many friends as you can to just the same simple email. ♥

♥Hugs♥ and Thanks from Around the World !!
        ---->   WE CAN DO THIS !!!  <-----




e)
PS: For those submitting written Public Comment or doing the same LIVE in Person~

Finally, in terms of preparation for CFSAC, the CDC website is currently under review. I suggest that we encourage people to mention what negative impact the CDC website has had on their lives (e.g. how their docs took the information, how it might have skewed media perception of CFS, etc.) and how the website could be modified to make the situation better and educate GPs/MDs "properly" by providing Quality videos for them to watch for their CEUs to maintain their licenses.

Until they get THAT in line with the
2011 CCCriteria for ME, we will NEVER make any progress..IMHO.

Let us "Occupy the CFSAC via Email" this week, OK ? 
Luv ya all for helping OURselves and staying ProActive ♥

If you are having any problems creating a ltter there are a few samples in the comment section of the FB Event that you may use.
http://www.facebook.com/event.php?eid=233487310041319
PLEASE be sure to send one to Pres. Obama also..  SEE the notice BELOW !!

© 2011 ~ John Herd

 

UPDATE: 

Dr. Lee clearly received a lot of complaints. The email many of us received is now on the CFSAC website.

I say we need to continue to write letters and apply pressure to let her know this "accommodation" is not acceptable.

KEEP SENDING THOSE LETTERS AND REPLY TO THEIR CANNED REPLIES ALSO, OK?

http://www.hhs.gov/advcomcfs/notices/n101811.html
FYI> RE: Section 508 ~

Office on Disability

Section 508 Update

Acknowledgement: Office of Equal Employment and Diversity Management, FDA

The goal of the Section 508 law (part of the Rehabilitation Act of 1973, amended in 1998) is to reduce electronic and information technology barriers experienced by people with disabilities. Under this law, the Federal Government is required to purchase and deploy new IT and other electronic products that are accessible or compatible with assistive technology used by people with disabilities.

In a memo to all HHS employees dated August 30, 2001, Secretary Thompson called this law an exciting opportunity to help close the digital divide for individuals with disabilities in America.

"Section 508 affects every employee within the Department, not just those who work with technology or procurement. Every HHS employee has a collective responsibility for compliance with Section 508's mandate to make our information accessible to individuals with disabilities. This means that HHS employees must take proactive actions to ensure that all electronic and information technology developed, procured, maintained, or used, and all new or revised information made available on the Internet and Intranet meet the new accessibility standards."

The accessibility standards provide technology access to members of the public and Federal employees who have disabilities. Lawsuits may be filed in federal court or administrative complaints may be filed with Agencies or the Department of Justice for non-compliance with the law. __  __  __

Successful implementation of Section 508 requires the support of every Federal employee who may be responsible for incorporating Section 508 into the design or development of IT systems requirements, or the development of web pages and their content. Any time there is a purchase request of any electronic or information technology, or at any stage in the procurement or IT development process, Section 508 accessibility requirements must be implemented.

For more information on Section 508, check out www.section508.gov, contact your agency Section 508 Official, or call the HHS Office on Disability.
******************************************************
THE WHITE HOUSE
Office of the Vice President
________________________
FOR IMMEDIATE RELEASE
February 12, 2009

VICE PRESIDENT JOE BIDEN ANNOUNCES KAREEM DALE AS SPECIAL ASSISTANT TO THE PRESIDENT FOR DISABILITY POLICY

First Time a President has had a Special Assistant Focused Exclusively on Disability Policy

BOISE, ID – Vice President Joe Biden today announced Kareem Dale as Special Assistant to the President for Disability Policy. The Vice President, who was leading a Presidential Delegation at the 2009 Special Olympics World Winter Games in Boise, Idaho, made the announcement during a stop at the Special Olympics’ Healthy Athletes Event, a worldwide program in which athletes receive a variety of health screenings and services.

"The commitment that the President and I have to Special Olympics and people with disabilities is deep and abiding. And we are backing up those words with real action at the White House," said Vice President Biden.  "This is our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration."

Dale, who is partially blind, will have direct access to the President in this role and he will coordinate the Administration’s efforts to see that people with disabilities are on a level playing field with all Americans.

 >>>>Think DALE would want to HEAR the CFSAC meeting LIVE ?? <<<<

**************************

 ORIGINAL NOTICE:

http://www.federalregister.gov/articles/2011/10/05/2011-25739/meeting-of-the-chronic-fatigue-syndrome-advisory-committee


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