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CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE

(ME-CFSAC) MEETINGS

CFSAC meeting on October 12-13-14, 2010 was outstanding. Thank you Dr. Wanda Jones for making sure the 3 day meeting, which included a "Science Day" ran well.

P.A.N.D.O.R.A.brought in the striking black and white ACT NOW Cards, which were used by patient advocates to express their concerns and outcry for the ME-CFS community in the U.S. and abroad.

Update:"Time for Action"- A CFS-ME Advocacy Campaign. Click here for instructions on

how to express our thanks to Dr. Dennis Mangan from the NIH and to get the latest update on what transpired behind the scenes during the CFSAC meeting.

..."The "Time for Action" campaign was successful. Congratulations to patients, their families and friends! More than 2,000 emails to NIH Director Collins and NIAID Director Fauci. Also, a large but uncountable number of calls were made and faxes were sent. Patients used their wonderful creativity and sent everything from our suggested one-liner to hand-drawn cartoons to poignant medical histories."

Pictured below are: Marly Silverman, Bob Miller, Joe Landson, Heidi Bauer, Charlotte, Ruth and Mike Dennis.

After Dr. Mangan embraced the term ME-CFS instead of just CFS, patient advocates cheered loudly in the room. In reaction, patient advocates wrote on the back of the black & white cards

"Thank you" acknowledging Dr. Mangan. Below are Cort Johnson and Mike Dennis holding the card.

A word of appreciation to Robert Miller, Rivka Solomon and Charlotte Van Solis who are coordinating and organizing these united advocacy efforts. We are proud to be part of it.

1Voice,1Community,1Cause™

Click here for P.A.N.D.O.R.A.'s testimony delivered

by Marly Silverman.

Click here for Marly Silverman's personal

testimony to the the CFSAC. on ERISA disability

issues.

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CFSAC meeting on May 27- 28, 2009 was one of the best PANDORA has ever attended.

Click here to read the written testimony provided by PANDORA. Marly Silverman, founder of PANDORA was given the opportunity during the time assigned for public testimonies to speak. She used Facebook and report on some of the action during the first day. She also posted on ME-CFScommunity.com

Click here to view the archived video broadcasts for both days. We were told that from now on all future meeting of the CFSAC will be broadcasted in order to comply with the ADA government mandates. A victory indeed for everyone involved in getting this off the ground - Rebecca Artman, MAME (Mothers Against Myalgic Encephalomyelitis), Dr. Kenneth Friedman, PANDORA's The Empty Chair Project in partnership with advocates from almost all 50 states including national, state and local sister  organizations including local groups who sent pictures, who wrote letters that we delivered to our congressmen, made phone calls and a special acknowledgement goes to MAME (Mother Against Myalgic Encephalomyelitis) a group of concerned grass roots advocates led by Jean Harris. Her team filed with the Office of Civil Rights to ensure accessibility of these meetings to the disabled would be accommodated. Kudo to her dedicated team! Our patient advocacy community through unity has its VOICE back where it needs to be.

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CFS Advisory Committee

Meeting was held on

October 29-30, 2009.

CFS Advocates attended this meeting in person or via the web site video-cast. On the first day October 29, 2009 - 400 Hits in the AM presentation via the the web cast. Hundred more have sent their story to the CFSAC committee. We want to thank those who sent their testimony via e-mail and cc Marly Silverman too.

Click here for the agenda's meeting

Click here for Marly Silverman's CFSAC testimony on October 29, 2009.

Click here for Dr. Kenneth Friedman's CFSAC October 30, 2009 written testimony

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CFSAC VIDEOS ARE BACK

GOOD NEWS! - Look at what collaboration and cooperation can accomplish in our community! A patient driven initiative collaborative efforts by CFSUntied, Diagnose Support, P.A.N.D.O.R.A. & Stand up 2ME are collecting the videos of the public and patient testimonies provide during the CFSAC two-day meeting on Oct 29 & 30, 2009.

This is a wonderful educational effort that we hope to translate to other languages as well. If you speak Spanish, French, Portuguese, Dutch, Italian, Creole,Hebrew, Japanese, Chinese and Arabic or any other language that you think it could help us to spread the word about chronic fatigue syndrome(CFS)-myalgic encephalomyelitis (ME), please contact P.A.N.D.O.R.A. or any of the patient groups or organizations involved.
http://www.youtube.com/user/CFSACvideos# p/c/D8BA914DCB0E7E99

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CDC INPUT FROM PANDORA

Please click here for the expanded and written input that was made orally on April 27, 2009 at the CDC CFS Stakeholders' meeting.  This same input was provided to the CFSAC members during the CFSAC meeting of May 2009.

It is estimated that 20 MILLION AMERICANS are stricken by Neuroendocrineimmune Disorders. Worldwide the estimates can be staggering. Recently a demographics expert suggested that between 23-28 million individuals are now suffering with Chronic Fatigue Syndrome or ME worldwide. Despite of these high numbers, our single voices have no impact. We are yet to estimate the total financial, social and demographics impact of all the illnesses that we embrace in our mission. But we are working on it.

QUALITY OF LIFE

Quality of life issues have been a major focus in everything we do on behalf of PwNEIDs.  Through partnership with other local, state and national organizations that share similar goals and mission we are indeed making a difference. Our awareness poster displays most of our educational community outreach programs that contribute and ensures quality in scientific research, quality of medical treatments, and quality of life for our community of suffering.

Please support P.A.N.D.O.R.A. nationwide efforts by making a donation of any size. As a 501 c 3, charitable organization, every generous donation we receive is tax-deductible under the IRS laws.

BRUTAL REALITY TO MILLIONS OF

AMERICANS

Neuroendocrineimmune Disorders are a brutal reality to now millions of Americans and millions worldwide. But we can change that with your generous donation. Help us to continue our mission by creating change within communities across the country and worldwide. Help us to save an individual, and his or her family from NEIDs' devastating effects. Make a donation today. Click on the Google Donate Button below and make a difference!

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