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, December 2, 2009

Dr. Oz Show on CFS This Thursday: Hoping it will be another holiday season gift to our community

Tomorrow, Thursday December 3, 2009, the topic on Dr. Oz television show will be on chronic fatigue syndrome (CFS). This is a much waited show as it is post XMRV virus related findings by the Whittemore Peterson Institute. I am hoping that they will interview Annette Whittemore, her daughter Andrea and of course Dr. Judy Mikovits and Dr. Vincent C. Lombardi. The CFIDS Association released today that Dr. Danica Moore will be interviewed. Dr. Moore has a child with CFS, and that gives her also an unique perspective.

This is actually a follow-up on previous interview with Dr. Jacob Teitelbaum a few weeks ago that also touched briefly on CFS-ME and other related illnesses. I am grateful to Dr. Teitelbaum for his appearance and for his desire to created much needed awareness for CFS-ME. I know that some will disagree with me, as he has taken some flack on how the interview was conducted. In his defense, I should mention that time constraint is always an issue when being interviewed by a television or radio talk show host. I have often joked that by the time I spell out the name of P.A.N.D.O.R.A. and describe the list of illnesses we embrace, I am going to hear those famous words..."Sorry we are out of time" or "You have 30 seconds." Time is finite in the media world. It is quite contrary in my world. To me time is all that I have, time to get better and time to find a cure. But I am digressing...

The important question I am posing tonight is will CFS-ME be given and be discussed with the scientific approach that it is necessary for the sake of millions of CFS-ME patients or will just get the fluffy approach or disconcerting attitude of "Hey Hon, I am tired too"? Like many stricken with a neuroendocrineimmune illness, I want to see a serious debate on the quality of life issues that affect us. I will be watching the show tomorrow with great anticipation, and with great hope that patients will no longer have to hide from family, friends and in many cases from themselves the fact that CFS-ME (as well as other neuroendocrineimmune illnesses) is the main reason why they languish alone and are so often abandoned by family, friends and employers.

I am hoping that they will discuss the need for the establishment of regional research centers by the Department of Health and Human Services (DHHS) as it is part of the CFS Advisory Committee number one recommendation among many others including ensuring the Centers for Disease Control and Prevention (CDC). I say no more excuses from our government!

I hope that these opportunities will continue to lead to a greater debate on the health care issues that are unique to individuals with neuroendocrineimmune illnesses. I am ready to join in the conversation. I know that many others around the country are too. Patient empowerment, taking ownership, standing up for patient's rights, embracing the same issues as a community are all signs being reported by thousands across our country and abroad. This amazing growth is an awesome result of great scale and greater results. I know I want to remain part of the solution. I know I am already in this patient revolution. How about you?
One Voice, One Community, One Cause™

1 comment:

Chris said...

Great post. The WPI's research is a great step forward. Even if transpires that XMRV is not the cause of CFS / ME it has done a great service in raising the media profile of this terrible illness.
In fact, there's now a Google Map dedicated to the CFS community.