Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Thursday, October 22, 2009

We are now 7 days before the next CFSAC Meeting in DC - This video should get you fired up to attend! "Does a Virus Cause Chronic Fatigue"

We are just about 7 days before the next CFSAC Meeting in Washington DC on October 29-30, 2009. This video should get you fired up to attend such an important meeting. We, patients need to show up in great numbers. We need to carry signs, t-shirts, bring pictures for the Empty Chair Project and if you are going to speak during the assigned public testimony periods, please send me an e-mail at msilverman@pandoranet.info with your prepared text. I am attempting to publish and publicize every poignant testimony, even if it is barely a whisper like in the case of Laurel Bertrand let me know, so we can share your story as well before, during and after the meeting.


Does a Virus Cause Chronic Fatigue?


Janis said...

Hi Marly, I posted my testimony and my Mom's on my blog. We'll be there on Thursday. Mike Dessin also got in at the last minute.

Unknown said...

This is great! Do you know who are also the other patient advocates who will speak there too. I am bringing some ribbons I read on M.A.D about CFS group that Ruth is bringing some ribbons and I would like to connect with her. PANDORA would like to invite every advocate who is coming for the public testimony for lunch at the cafeteria which is in the same floor of the meeting room. Would you and your mother be able to join us for lunch? This is a take of our appreciation for you! Please spread the word and ask folks to contact me at msilverman@pandoranet.info

Rebecca Harrington said...

Very sorry I only found this today, Dec. 2nd, 2009

I was labeled with Fibromyalgia in 1993. The loss of a productive life continues to be a misnomer.
This is a serious loss of living to give to others. The hope of a real diagnosis (possibly related to the HPA Axis) is my prayer. That's where the beginning of real progress for a Cure begins. Thank you for being such a strong woman.
Becky in Wisconsin

Unknown said...

I have your video on line to be featured on our youtube.com page. Every week I plan to feature someone. I am so excited that we have so many videos and I am grateful to Ben for posting them for us. How is your lovely mom doing?

Unknown said...

Dear Becky,
I am glad you found my blog and you are now aware of the work PANDORA does. This is the beginning of a new era for NEI (neuroendocrineimmune illnesses). We have to keep the momentum going. Glad you are joining us in creating additional awareness. One Voice, One Community, One Cause(tm).