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).

Tuesday, May 6, 2008

CFSAC Meeting - Washington DC, May 6,2008 - Day 2, Part I

Great items to report. The Empty Chair project went well. I was pleased to see that the room was not empty as usually and I had a less amount of chairs available for placement of caregivers/family pictures and of CFS individuals. The feedback we received from Dr.Anand was really encouraging. He is looking at all venues of communication with the patient population by using available technology that we advocacy orgs can post on our web sites and in the case of P.A.N.D.O.R.A., on our non profit page of YouTube.com.

In the meantime, we patients need to click on their web site at http://www.hhs.gov/advcomcfs/pastmeetings.html to read the Nov 28, 2007 meeting minutes to get a feel and an update for what the CFSAC is doing. I want to acknowledge here everyone who sent us an e-mail and ask for your understanding if we did not get back to you in time for this meeting. We received 100s e-mails and letters and our volunteer office staff was overwhelmed with the response. But we will keep your letters, pictures and will contact you to finalize it as we are considering making the Empty Chair project a "travelling exhibition". We will let you know if it will be possible.

The CFSAC is up for renewal this September and although the renewal of this committee is not in jeopardy as I was told by DHHS staff, the CFIDS Association does not want us to take any chances and it has issued an action alert asking CFS patients to write to Secretary Leavitt to ensure the committee remains fully funded. I actually would like to see its budget increased considerably. So make sure to say it if you write to Secretary Leavitt on the issue to raise its future funding.

Today as I was told, (and as I witnessed yesterday) was a heart wrenching public testimony period, as the CFS patients made their presentations in person. Every personal story makes your heart cringe and your eyes watery. As much as I am a veteran,seasoned patient advocate, the emotion I hear, see and feel emanating from these patients are difficult to handle. And I today did not get to witness them in person due to a morning visit to Capitol Hill to visit House Representatives Ileana Ros-Lehtinen whom I had the opportunity to meet again in person, and with Rep. Robert Wexler'staff as well with Rep. Ron Klein. These morning meetings were quite productive as our appropriations requests are in place and moving along the long tedious process. They will require a bit of tweaking regarding the language we used, and P.A.N.D.O.R.A. will work it out in the coming months, but before we tackle the next step of this project I will have to rest aggressively and recoup from this trip.

It is gratifying to see that Rep. Ros-Lehtinen understands that without a Center of Excellence and without statutory language with specific funding for the CFS/Neuroendocrineimmune Centers of Excellence, their establishment will not be realized. I say she gets it! And so do Reps Wexler and Klein (my own congressman who represents the district where I live in Florida!)

I am extremely grateful that two of their staff members: Eva Dominguez (Wexler) and Virgina Neale (Klein) came to the CFSAC meeting in the afternoon and were educated and appreciated for their interest in coming to such an important meeting for our community. I have been coming to Capitol Hill for the past 4 and half-years if not longer and this is the first time congressional staffers attended a CFSAC meeting. I am excited, grateful and elated to say the least!

A long list of recommendations are being sent to Secretary Leavitt by the CFSAC and it is incumbent on us to advise Secretary Leavitt of the importance of these recommendations to our Quality of Life. There is a huge momentum here and we need to grab it!

And to finish my report on the last day of this two-day meeting, with some exciting notes: The presentation by Dr. Kenneth Friedman, our Secretary & Chairman of Public Policy for P.A.N.D.O.R.A. provided a great insight on the New Jersey CFS Association and on their medical student scholarship, which is creating the much needed awareness of the plight of CFS patients to physicians-in-training, and affording our community a greater potential that the next wave of physicians will be well trained in neuroendocrineimmune disorders and in particular CFS. He proudly announced our own scholarships and we are elated that one of them we are naming it after him for his accomplishments, hard work and collaborative efforts in uniting our community. It has been a pleasure for me to personally collaborate and see the results of our joint efforts. It is extremely gratifying!

We are hoping that other organizations follow and apply these initiatives in their own regional areas. Our community grants are made to work as seed money/change to encourage this type of collaboration and additional initiatives.

I am also amazed at one of the most professional patient representations I have seen in the CFSAC since I have attended these meetings by Rebecca Artman,our Public Policy and Community Advisor, who valiantly, smartly and persistently is fighting for patient's issues. Her work has been diligent, to the point, and on target! I take great pride to say that she is a true representative of what P.A.N.D.O.R.A. means to our community.

I also want to invite you all to join P.A.N.D.O.R.A.'s efforts on May 12 2008-Awareness Day. During the month of MAY, series of proclamation day letters for May 12as P.A.N.D.O.R.A.'s Neuroendocrineimmune Disorders Day in the cities of Pompano Beach,Pembroke Pines, Lighthouse Point, Deerfield Beach, Delray Beach, Boca Raton, all in the state of Florida and in the city of Murphy, North Carolina are being issued by their respective mayors. If you live in any one this cities, please send your mayor a note of thanks!

I want to thank Cort Johnson, Pat & Bruce Fero, Dr. Sharon Ostalecki, Claudia Wendlandt and Rik Carlson whose organizations signed up on the letter we sent to Congressional Members of the Health Committees (appropriations) as well as their own congressmen inviting their staff to attend at least the public testimony portion of the CFSAC meeting followed by a short list of priorities that only funding will address.

I also want to thank patient advocates Mary Schweitzer, Megan and many of the brave patients, parents and caregivers who presented their testimonies during these two day-meeting. It goes further to show, that ONE VOICE, ONE CAUSE, ONE COMMUNITY, United can make a difference and I ask you who is reading this post today, to Join US and become an Agent for Change too!


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!

CFSAC Meeting - Washington DC, May 5, 2008

I am here in Washington DC on my way to attend the May5-6, 2008 CFS Advisory Committee meeting at the DHHS. I am excited as I heard that several patient advocates are flying in from different parts of the country to submit their testimonies. This indicates to me that I may not have as many empty chairs for our advocacy project which is exactly the results that we like to see.

I have letters from CFS patients from several states and their pictures as well to place in the empty chairs. I am meeting with some congressional staffers tomorrow. Dr. Kenneth Friedman, our Secretary and Chairman of our Public Policy committee will make a presentation at this meeting regarding initiative or methods to get medical students to learn about CFS-ME. We are excited about his presentation because the methods he spearheaded at the NJCFS Association is something that other organizations can follow. P.A.N.D.O.R.A. has expanded their original initiative and we have established community grants which will be disbursed in the coming months. The first community grant from P.A.N.D.O.R.A. was given to DePaul University for the Chronic Ill Student Patient program. The second one was an advocacy grant given to the CFIDS Association of America, Inc. Complete details on these grants and about our entire community grant initiative will be going out soon. Please check our web site on May 12, 2008 - Our International Awareness Day - One special gift that Tom Hennessy Jr. gave us when he worked valiantly for the rights of CFS and Neuroendocrineimmune Disorders Patients worldwide.

I will provide you with some pertinent information as the meeting progresses and when I am able to log on the net.

As May 12 approaches, the cities of Murhpy-North Carolina, as well as the cities in Florida of Delray Beach, Pembroke Pines,Lighthouse Point and Boca Raton have issued letter proclaming May 12, 2008 - PANDORA's Neuroendocrineimmune Disorders Awareness Day in their cities. More to come soon...
Life is Good!

Marla Silverman