ME/CVS/Fibromyalgie Nationale Protestactie Patiënten België VT4 Nieuwsit...

Thank you Frank for sharing this with us from Belgium. This is wonderful! "Wake Up Call" for ME/CFS  and did I understand correctly for fibromyalgia too? We join you all from the U.S. in solidarity. May Awareness month is around the corner. We will be visiting congress and will provide testimony at the CFS Advisory Committe. Together we are: 

One Voice, One (wordwide) Community, One CauseTM

 

We are getting ready for May Awareness Month for NeuroEndocrineImmune Diseases. CFA Advisory Committee Meeting is around the corner. Get Ready! Let's hear the many voices that make up our overall community. Time for a change! The Time is Now! ACT NOW! 

IT IS TIME FOR CHANGE - Part IV

As part of the IT IS TIME FOR CHANGE grass roots initiative it is important to share with you the following CDC response that was posted (modified on Sept 1, 2009) on the CFS CDC program web site:

Input on CDC CFS Strategic Research Plan
"Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).

CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas."

To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.


Pro-Health Library also posted on September 8, 2009 a short article stating that"CDC to Present 5-Year Research Plan Oct 29-30 at CFS Advisory Committee Meeting", In the article they also referred to Dr. Leonard Jason's position on the empirical CDC CFS definition.

I have not seen an announcement from the CDC regarding what their next move will be. I suppose it takes time to compile the response of the stakeholder's meeting. I am sympathetic to that. Individuals familiar with our advocacy community have been told that positive changes will be made at the CDC, but no lay out of a more specific plan regarding the leadership and or the management team of the CFS CDC program has been announced.

It is known and customary that at every CFSAC meetings there is always a report presentation from the CDC ex-officio member. I suggest that what our community needs to do is to pack the room at the DHHS on October 28-29. Patient advocacy organizations need to send at least one representative to attend the Oct 28-29 meeting. Patient, family members and physicians treating CFS patients and other neuroendocrineimmune disorders (NEIDs) need to send in their testimonies by emailing them to cfsac@hhs.gov.

This is a most auspicious opportunity and we cannot let that go unnoticed. I am hoping that the Empty Chair Project will not have to be displayed once again at the next CFSAC meeting to highlight once again how empty that room is without patient advocates.

IT IS TIME FOR CHANGE... to be continued

Agent for Change

Well-come to my blog -specially titled Agent for Change and to my first posting. After a couple of years deliberating the pros and cons of starting a blog I decided that this could be a good venue for becoming a more effective "agent for change" for neuroendocrineimmune disorders such as chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War illnesses, (GWI), Lyme disease and multiple chemical sensitivities (MCS). One concern I still have is to be able cognitively to handle the "ins and outs" of a blog, but many have assured me that I will be able to do it. I am willing to take the risk.

One person who inspired and instill the "blog bug" on me was Rebecca Artman, current Public Policy and Community Advisor for PANDORA., Previously Rebecca was our Vice-President and founding board member who had to assume this new role due to her appointment by U.S. Secretary of Health, Michael Leavitt as the sole patient advocate member of the distinguished CFS Advisory Committee, a congressional committee "established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS)." Rebecca has often suggested me to do a blog so I could share with you a bit more about PANDORA while giving me another voice outside of our organization. There lies the reason why the name of my blog is titled "Agent for Change", because it is more of my personal take on being the founder of a very special nonprofit organization. It is the opportunity to share with you some of the advocacy challenges I often encounter.

Another person who inspired me was Bill Lampton, Ph.D. from Championship Communications. I have much to learn from this amazing individual. Dr. Lampton is someone who excells in the art of communications with great success. I first met him at the 2004 "Ultimate Day of Balance", an event created by Susie Levan, the publisher of Balance Magazine. I approached him after his motivational presentation which was full of great insight, and chatted with him briefly. I was impressed with his techniques designed to encourage successful communication with any audience. I invite you to check his blog and read the posting of a customer service experience I had with a local gas-service station in my neighborhood. I often share with Bill P.A.N.D.O.R.A.'s events, ongoing hurdles and accomplishments.

So here I am. I suppose this has been a long evolving process. I am excited about this blog almost as much as I was when I founded P.A.N.D.O.R.A. I love an adventure and a good challenge! As a CFS patient advocate the very personal physical and health challenges sometimes get in the way of accomplishing personal dreams and goals. But through baby steps I hope this new journey will be a good learning experience.

In the beginning of P.A.N.D.O.RA., I remember that one of the hardest things for me was to participate in the evolution of our web site. Technology in some level has always the potential to intimidate me. I was lucky that the P.A.N.D.O.R.A.'s web site design and implementation was a generous donation by Susan Clifton, one of our founding board members and a extremely creative web designer who is now pursuing her love for painting. The transition was then much easier for me. With the blog I have to acquire some new computer learning skills and take the time to learn about blogging. It is not easy to teach an old dog new tricks specially one with CFS-ME. I am lucky that the new format for blogging on Google is now so much more user friendly. Since then I have learned a bit about the jargon that the web environment has created. It helped too do some reading (over and over) and receiving coaching on how to blog.

As we discussed technology, blogging and web sites I want to take the opportunity to invite you to visit P.A.N.D.O.R.A.'s web site . On our home page you can sign up to become a member and to receive our newsletters. Please make sure you state your city and state, so we can send you information, news and other initiatives that are more related to your area and minimize spam. While there please check the following pages: Wellness Directory, Empowerment Groups (support groups), our grass roots initiatives and our fund raising events. On our home page you will find a Google Donate Button. Since we are one of the recipients of a Google Grant, if you donate through the Google Donate button found on our home page, we will receive one hundred percent of your donation – no fees acquired. Over the years, we have had a bit of revamping on our our web site, creating new pages, tweaking the navigational process and constantly testing it to ensure we have done the best we can with our resources. We deliberated in getting a total new look and revamping our site, but the cost associated with it, prevented us from taking this route as we preferred to allocate the funding to other areas.

The needs of our community are many. The needs and the lack of quality of life associated with having CFS-ME, fibromyalgia (FM), Gulf War syndrome (GWS), multiple chemical sensitivity (MCS) and/or environmental illnesses (EI), and Lyme disease, constantly prove to be a challenge for P.A.N.D.OR.A. when communicating with our audience. It is particularly difficulty with the limited resources we have. At the end of the day, creativity and the hard-core dedication of our board of directors, volunteers, supporters and benefactors who contribute towards its success is what really drives our nonprofit charitable organization to successful accomplishments.

You can follow us now on Facebook, Twitter, follow me on Twitter and you can join P.A.N.D.O.R.A.'s group on me-cfscommunity.com. We have a wonderful VERIFIED cause on Facebook - The NeuroEndocrineImmune (NEI) Center(TM). with as of Sept 14, 2009, has 559 members. This cause has two other Facebook groups supporting it: The CFS/FM Center for Hope with 217 members, and the Depleted Uranium is a War Crime, with 42 members, we have a total of 857 members supporting our non-profit. If you add our PANDORA's Facebook page currently with 194 fans, we have a total of 1,051 fans supporting PANDORA. We need to spread the word about PANDORA's facebook page to increase the number of fans. I hope you will become a fan if you are on Facebook.

I am extremely grateful to: Lori Fidler, CFS FM Hope Center; folks handling Depleted Uranium is War Crime on Facebook; Jilly Serotta, and Beth Gilbert (administrators of our Facebooks accounts; Mary Ann Parker, Gulf War veteran promoting us on Twitter, and to everyone who donated to PANDORA on Facebook so far totaling $456. Thank you!

I look forward to your input, suggestions and feel free to share some of your most prominent concerns through this blog. Bear in mind that personal health challenges may prevent me from addressing them quickly, but eventually I will follow up with a reply. I welcome a sincere dialogue that empowers our community of suffering through respect, breaking established paradigms and encouraging initiatives that are "outside of the box " - Pandora's box. I also ask you to always use kindness and respect through this dialogue as it should always remain a strong component of our community. I look forward to sharing some of our grass roots initiatives with you and some of my personal approach when I act as an "agent for change" on behalf of P.A.N.D.O.R.A. and on your behalf.

From time to time, I will post spotlights on individuals that shape, make a difference and are focused in promoting a strong, powerful patient advocacy community and that individual could be you! I will also post personal takes on issues that are not necessarily directly related P.A.N.D.O.R.A., but will add levity, humor and a personal touch to my blog.

Let the journey begin...

UPDATED: September 14, 2009