Well-Come!

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).

Friday, September 4, 2009

IT IS TIME TO CHANGE - Part II -October 29-30 Next CFSAC Meeting in Washington DC- Department of Health and Human Services (DHSS)

Federal Register date announcement for the next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. We need to ensure once again attendance to this important meeting will continue to increase.

It is Time for Change.
We need to fill each chair in the meeting's room with individuals from all every regions of our country to speak loud and clear that progressive changes have to be made within DHHS and its institutes, agencies that will advance the science in neuroendocrineimmune disorders and more specifically on CFS-ME.

Can PANDORA count on you to be there? We are creating a communication list to make sure we coordinate a national effort to fill the room and show our support for the CFSAC and their recommendations. We will be asking for a meeting with the Secretary of Health either on Oct 28-29, 2009 to share our UNITED message. IT IS TIME FOR CHANGE!

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]

=======================================================================
-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

ACTION: Notice.

-----------------------------------------------------------------------

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]

BILLING CODE 4150-42-P

Thursday, September 3, 2009

Be a Guest Blogger! : Invisible Illness Awareness Week

NICIAW is Sept 14-20, 2009 and you can find out more info at www.invisibleillnessweek.com . They are having a 5-day virtual conference with 20 speakers giving seminars. -Be a Guest Blogger! : Invisible Illness Awareness Week

They are looking for guest bloggers. "Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where."

This is a great opportunity to show off your own blog and be part of something special. Tell Lisa that Marly Silverman, from PANDORA is grateful for the great work that they do.

Wednesday, September 2, 2009

IT IS TIME FOR CHANGE - Part One

You are aware that P.A.N.D.O.R.A. the patient advocacy organization I represent embraces the concept of neuroendocrineimmune disorders. But today I want to specifically target one of these illnesses – Chronic Fatigue Syndrome or ME, as it is known in Europe and other countries.

The reasons why I am highlighting CFS-ME is simply because of the major historical opportunity that is being augmented by the upcoming CFS Advisory Committee (CFSAC) October 2009 meeting at the Department of Health and Human Services (DHHS) headquarters in Washington DC. You may or not be aware but at the May 27-28 meeting, a historical set of events occurred – The CFSAC gave a “thumbs down” to the current Centers for Disease Control and Prevention (CDC) leadership in charge of the CFS scientific research and public education programs.

This move was expressed quite well on their number one recommendation: ”Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” You can click here to read the full set of recommendations at that meeting.

I say again historical, because the IACFS-ME Association also gave a “thumbs down” to the CDC leadership, followed by the CFIDS Association of America, Inc, one of the largest CFS patient advocacy groups in the U.S. Never ever have I been told, (and since I was diagnosed with CFS-ME in 1998 – a mere 11 years compared to many who have had this diagnosis for 25-35 years), have these major players agreed in something so fundamental.

It does not escape from us either, that the CDC stakeholder’s meeting held on April 2009 generated a barrage of other organizations and individuals stating their “thumbs down” for the 25-30 year performance of the CFS research & public education programs at the CDC as well. I represented P.A.N.D.O.R.A. by delivering a short presentation (later expanded) of our concerns based on the requested input outline. Many other individuals, and astutely so, saw the opportunity to also deliver a scathing message to the decision maker officials at the CDC that the current CFS program has not had for a long time, the support, the trust and the much needed vote of confidence of the patient advocacy community. Now, as it seems, the CDC does not have the crucial vote of confidence either from the scientific and medical community as well.

After reading John Herd’s latest blog on me-cfscommunity.com, I decided to postpone today’s original posting for a later day. Instead I decided to write about this important issue and about some other ideas that have been brewing on my CFS-ME-FM brain: how to create a social public awareness event that would mobilize our nationwide community if not worldwide, raise funds, generate media interest, touch the heart of lawmakers and just as importantly, reach the decision makers at the Department of Health and Human Services (DHHS) and at the Centers for Disease Control and Prevention (CDC).

While I will not engage in personal attacks, nor demonize individuals whom I have had the opportunity to meet and I have learned to respect, I do too believe IT IS TIME FOR CHANGE. It is time for a significant change to be made by the decisions makers at the CDC so CFS research can be progressive and yield better and greater results. It is time for the CDC to take its losses, re-organize, re-vamp and move on! For far too long the CFS-ME patient community has been suffering greatly.

But how do we convey this strong message? One idea that came to my mind was inspired by Joshua Tabb who blogs for The Case Foundation. Joshua shared on his blog article Learn the Lingo: F is for flash mob, mobilizing your mob. So the idea is to do something that is related to our community of suffering that will create awareness to the plight of millions of Americans and many other millions worldwide. What it would be? Folks wearing a t-shirt saying IT IS TIME FOR CHANGE with a pretty logo and lying down in nearby mall? How about wearing a mask and freezing for a flash moment? How about doing a line dance? How about holding hands? Perhaps we should all carry letters that at a signal, we would raise them to read IT IS TIME FOR CHANGE or to read One Community, One Voice, One Cause. But the key point of "flash your mob" is to create a moment in time a very short time (5 minutes or so) that occurs peacefully, quietly, but leaves an indelible mark in the public & government consciousness.

So I guess all I have to say now, is that I may not know much,but this much I instinctively know... IT IS TIME FOR CHANGE. I think you will agree.

Saturday, August 29, 2009

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.

Wednesday, August 26, 2009

DHHS SEEKING NOMINATIONS FOR 5 POSITIONS WITHIN THE CFS ADVISORY COMMITTEE

Well, folks is here the much awaited request for nominations for 5 positions to the CFSAC was announced today in the Federal Register

Deadline is September 20, 2009. New term will begin on January 3, 2010.

P.A.N.D.O.R.A. has a few names that we would like to nominate, but if you know of a researcher or a physician in you area that we could also nominate and the individual is committed to accepting the nomination and serve in this distinguished committee, we will nominate the individual or individuals.

You can e-mail me at msilverman@pandoranet.info.

Some pertinent information below:
DATES: Nominations for membership on the Committee must be received no
later than 5 p.m. EDT on September 20, 2009, at the address listed
below.

ADDRESSES: All nominations should be mailed or delivered to Wanda K.
Jones, DrPH, Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee; Office on Women's Health; Department of Health and Human
Services; 200 Independence Avenue, SW.; Room 712E; Washington, DC,
20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Department of
Health and Human Services; 200 Independence Avenue, SW; Room 712E;
Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee was established to advise, consult with, and make
recommendations to the Secretary, through the Assistant Secretary for
Health, on a broad range of topics including (1) the current state of
the knowledge and research about the epidemiology and risk factors
relating to chronic fatigue syndrome, and identifying potential
opportunities in these areas; (2) current and proposed diagnosis and
treatment methods for chronic fatigue syndrome; and (3) development and
implementation of programs to inform the public, health care
professionals, and the biomedical, academic, and research communities
about chronic fatigue syndrome advances.

Nominations

The Office on Women's Health is requesting nominations to fill five
positions for the CFSAC. The positions are scheduled to become vacant
on January 3, 2010. The Committee is composed of seven scientists with
demonstrated expertise in biomedical research and four individuals with
demonstrated expertise in health services, insurance, or voluntary
organizations concerned with the problems of individuals with CFS. The
vacant positions include all four categories. To qualify for
consideration of appointment to the Committee, an individual must
possess demonstrated experience and expertise in the designated fields
or disciplines, as well as expert knowledge of the broad issues and
topics pertinent to chronic fatigue syndrome....

For the complete public notice in the Federal Register click here.

PANDORA Twitter Group

PANDORA Twitter Group

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)
================================================
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.
================================================
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)."