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™

Health Care Reform and the NEIDs (Neuroendocrineimmune Disorders) Community

Professor Neil H. Buchanan, a Tax Law Professor has written a very interesting article on healthcare rationing. He brings forward not only a logical response to the "rationing issue" being pushed by strident opponents of the "Public Option". He provides a very good explanation of the concept of rationing. His article brings light to the overall concerns that we as a society need to look closely: How to implement a just and fair health care accessibility to all Americans, despite social and class demographics?

Just like in the criminal justice system there seems to be two systems on healthcare: one for the rich, and one for the poor or middle class. The goal of current healthcare reform is to attempt to bridge this gap between gender, age, and ethnic disparities and of course among social classes.

Rationing is already part of the health care "free market enterprise" as we have now. The basic difference between what we have now and what health care reform will attempt to change is that currently there is no transparency in our health care system. The public (consumers of health care insurance programs) do not have access to the rule of the game, i.e.: how insurance companies really choose what services to provide to consumers and how these choices are really marketed or offered to the consumers, leaving several important questions unanswered: Are we getting a fair price for the services we are getting? Are the services we are getting now what we really need or want? What is wrong with injecting a bit of competition in the market? Isn’t competition that makes any market to thrive?

Some will debate that when government interferes in the market, it is no longer a free market. But isn’t our government founded in the principles that our “government is of the people, by the people, for the people”…(Abraham Lincoln)

I should point out that rationing has been a part of the picture in political & economic societies, from the least sophisticated to the most industrialized ones. Sadly it has occurred within the neuroendocrineimmune disorders community for far too long. Even before the issue of our national economical crisis came to light, our community has experienced deep personal, professional and financial hardship way before this national recession came to place. This is a fact! It is as well an an issue of quality of life that I have advocated over the years. Most of the advocates within our community understand this concept already. Recently on one of his posts, John Herd shared his take on these important issues too.

The fact that now a much larger number of Americans are now facing the same issues the NEIDs community has been facing for years, brings a whole new take on the situation by the powers to be in government and political science fields. The hardships that health care reform is trying to address, mirror the lack of accessibility to medical care, which includes not enough willing treating physicians in the NEIDs field; loss of employment which leads to lacking accessibility to private or employer medical insurance. These medical and financial challenges have been a part of life for just about every NEIDs individual whom I have spoken since I became an advocate. Health Care reform is a prime opportunity for these deficiencies in the social, disability and healthcare system to be addressed in a way that will benefit our community of suffering.

Here is Tax Prof Neil Buchanan (George Washington), inaugural column: Rationing Health Care: We Have Always Done It, We Do It Now, and We Always Will:
"As the debate over health care reform has become increasingly degraded over the past few weeks, one of the claims that has been treated as a serious complaint about the Democrats' plans -- unlike, say, the claim that the plans include "death panels" -- has been the assertion that their proposals will result in the rationing of health care. ...
The bottom line? There is not, has never been, and can never be, enough medical care to cover everyone in every situation. Rationing is a fact of life. Current health care proposals in Congress would change the rules for rationing, bring them into the light, and create accountability for the decision makers. If we do not adopt those proposals, we will go back to the chaotic form of rationing that has been killing far too many of us for far too long."

Buchanan Named Featured Columnist at FindLaw

I look forward to reading your comments and feedback.

A fighter for Health Care reform dies on August 25, 2009

Senator Ted Kennedy passed away on August 25, 2009, after a battle with brain cancer. We have lost a statesman and an individual who was a heck of an advocate for the poor, for the disabled, for women's rights and the number one proponent for health care reform. He will be missed. He represented one of the last bastions in the senate of the Kennedy legacy. May he rest in peace.May G-d bless his soul.

Update from P.A.N.D.O.R.A.'s newsletter: "We mourn the passing of Senator Ted Kennedy late last night (August 25, 2009). Many in our community are not aware that it was Senator Ted Kennedy and Representative Henry Waxman that brought CFS advocacy issues in the forefront through a congressional mandate in 1993. The establishment of the peer review process for CFS and the establishment of the CFSAC, came about from legislation introduced in 1993 by Senator Kennedy and by Rep. Waxman. We owe Senator Ted Kennedy (as well as Rep. Waxman too) an enormous gratitude and we mourn the loss of one of our strongest advocates. A few years ago,while visiting the Capitol, I met with Rep. Patrick Kennedy and we discussed the special commitment of his father and his as well, towards the neuroendocrineimmune community of suffering, specially on CFS-ME.

Historical Background of the CFS Recurring Special
Emphasis Panel 103rdCongress (1993-1995)
H.R.4
Title: To amend the Public Health Service Act to revise
and extend the programs of the National Institutes of
Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Rep. Waxman, Henry A. [CA-29]
(introduced 1/5/1993) S.1
Title: A bill to amend the Public Health Service Act to
revise and extend the programs of the National
Institutes of Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Sen. Kennedy, Edward M. [MA]
(introduced 1/21/1993)
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Sec.902. Chronic Fatigue Syndrome
(b) EXTRAMURAL STUDY SECTION-Not later than 6
months after the date of enactment of this Act, the
Secretary of Health and Human Services shall establish
an extramural study section for chronic fatigue
syndrome research.
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6/10/1993 Became Public Law No: 103-43.

Click here for the presentation of September 17, 2007 of the NIH peer review process of the Center for Scientific Review (CSR)."