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).

Monday, May 5, 2008

CFSAC Meeting - Washington DC, May 5, 2008 - Day 1, Part II

Today's meeting lasted until 5:20 pm. My name was included as the last individual to speak during the 45 minute public testimony period. Because many patients submitted letters to the committee and ask to present their testimony by phone, the committee expanded the public testimony period to 45 minutes instead 30 minutes as it was planned. I actually ended up being the next to the last as they tried again to reach out a patient whose phone number was not being answered.

It was a very busy day for the CFSAC. The first presentation was made by the CDC ex oficio: Dr. Bill Reeves, who provided a power point one titled CDC CFS Program Update May 2008 - Quality of Life/Education/Knowledge-Attitudes-Beliefs,followed by a presentation by Fred Fridinger, DrPH, CHES, Marketing& Communication Strategy Branch, Division of Health Communication & Marketing,CDC. This campaign will run from Nov 2006 to September 2009. Upcoming photo exhibit venues will be San Antonio, American Academy of Physician Assistants, Maryland Science Center (Baltimore,MD), Great Lakes Mall, Mentor,Ohio, Penn Square, Oklahoma Cit, OK and will culminate in Sept 22-29, at the Peyton Anderson Health Education Center, Medical Center of Central Georgia, Macon, GA.

Between now and Sept 2009 there will be expanded TV and Radio PSAs, distribution of brochure and healthcare profession toolkit and paid advertisement online media such as WebMD, Google Health,etc.

Fridinger reported that over 500 million readers/viewer impressions were recorded through March 2008 by the Media and that 24,527 of click-throughs to campaign's web site was tallied.

Here is the CDC web site www.cdc.gov/cfs

Subcommittee updates were made 30 minutes each on Education, Research, Quality of Life. The CFSAC is trying very hard to break down the barriers preventing expanded funding for research which will translate to medical treatments which will translate to quality of life for CFS patients. The government layers are monumental and once again I am reminding CFS patients to take ownership of our advocacy movement and pursue your member to be pro-active and take action on these issues.

We, as patients need to persist, insist until Center of Excellence are established i the U.S. Without them CFS research will not move forward in the pace that it must. Get on your PC, make a phone call or send a fax...Get involved and do it today and tell your congressman/woman to support our appropriations request for funding and forceful language to be included in the FY 2008 budget and in 2009 as well.

In the afternoon, during public testimony, 6 patient advocates either made their presentation in person or by phone. Pat Fero representing the Wisconsin CFS Association & yours truly P.A.N.D.O.R.A.)in person. Pat presented 76 postcards from her organization members (out of 216t) who wanted to attend the meeting but cannot therefore being part of the Empty Chair Project. She also presented data on how CFS vs GWI is being covered by our government.
I shared our efforts for May 12 including the Golf Classic on May 23, 2008 at the Country Club of Miami and the fact that Centers of Excellence are a must! Without these centers, our research scientific community cannot apply for expanded grants, access to medical training grants diminish considerably and obviously it diminishes the urgency that the U.S. Government needs to apply to eradicate CFS in the U.S. I suggested the CFSAC to investigate the process that immigration has to allow physicians and researchers from other countries to practice in the U.S. since Americans physicians are refusing to treat CFS and other neuroendocrineimmune patients. I mentioned PANDORA's physician mentoring program and what it meant for our community of suffering. We are an underserved population and now more than ever I believe that only through a statutory mandate from congress we will be counted!

I shared the letter that PANDORA and 5 other organizations such as the Wisconsin CFS Association, The Vermont CFIDS Association, H.O.P.E., The Fibromyalgia and Chronic Fatigue Syndrome Georgia Association, The New Jersey CFS Association and Phoenix Rising sent to the Members of Congress on Health Issues (Appropriations Committees both in the Senate and House)asking them to send one of their staff to attend the CFSAC meetings specially during the public testimonies.

Finally, a last thought. Twenty letters were sent to the CFSAC from patients across the country, some had pictures as part of the Empty Chair project. I will post the pictures of the Empty Chair project on our web site when I return to Florida.
For now I have to say good night and tomorrow I will report again.

Remember You and I can make a difference. Advocacy works!

No comments: