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).

Wednesday, March 3, 2010

'Ryan Baldwin case is an ominous wake-up call'

Due to a longer unexpected relapse (is there any other kind when you have CFS?) I haven't been blogging much. P.A.N.D.O.R.A.'s facebook page and dealing with some other family health issues have taken care of my time and stamina. Although advocacy is a hobby for me, sometimes one has to walk way to recharge one's batteries. The statement you are about to read is truly important not only to parents with children with CFS-ME, but to parents with the neuroendocrineimmune disorders (NEIDs) P.A.N.D.O.R.A. also embraces:
Fibromyalgia, Multiple Chemical Sensitivity, Chronic or Persistent Lyme Disease.

The Pediatrics & Family Conference is to be held in the Asheville area. Asheville as you will read by clicking on the link below is a gorgeous mountainous area - the Blue Ridge Mountains - and famous for their celebrity homes and art. But Asheville is also the the back drop for what I qualify as "an institutional ingrained uneducated medical view (by physicians in North Carolina) and in other metropolitan areas of the country in regards to CFS-ME and other related chronic illnesses.

Our goal with this conference, is to highlight the continuing inadequacies (despite) years of the CDC medical provider education complemented by the public educational campaign with the CFIDS Association. Despite the hardwork from the CAA, we, patients with CFS-ME are still dealing with the fact that there are still only a dozen of CFS specialists in a few states treating CFS-ME patients, who are reaching retirement age, and the fact that the number of primary physicians in the 50 states only have a mediocre understanding of CFS potential treatments.

For the past two years when making my personal presentation to the CFS Advisory Committee board I brought the fact that if there are no American physicians willing to learn, to educate themselves about the potential treatments for CFS-ME (as well as the other NEIDs) that P.A.N.D.O.R.A. embraces. And, since this has not changed and it does not seem that it will change despite of all the advocacy that organizations have created, then we must import foreign physicians from other countries to do the work that their American counterparts are not doing or willing to do.(We will have to do that anyway, when health care reform comes to place and I hope soon.) At P.A.N.D.O.R.A. we have taken this to heart. We assisted Dr. Lina Garcia in getting her working visa to the U.S. Dr. Garcia is now going through the medical board licensing rigorous process so she can start a residency program and then open her practice for CFS-ME, FM and GWS private practice if she does not go into scientific research for neuroendocrineimmune disorders. For about 3 years now she has been under the supervision of Dr. Nancy Klimas at the University of Miami, CFS clinic in downtown Miami. By the time she will be done with this training she will be able to apply it to her residence training rotation and teach other physicians in the process too.

For now I ask you to read P.A.N.D.O.R.A.'s statement and get involved in any way you can in acting as an advocate. One opportunity will be to join our Advocate Extraordinaire program. E-mail me thorugh our contact page on our site, and I will add your name to the growing list of Advocate Extraordinaire who are getting ready to make a difference.

'Ryan Baldwin case is an ominous wake-up call'

No comments: