Advocacy Action Alerts

NEW! October 11, 2007

Important Announcement from FROM P.A.N.D.O.R.A!

The P.A.N.D.O.R.A. International Advocacy Video Contest On Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivities on YouTube.com

Coral Gables, Florida - Oct 11, 2006- This international contest involves submission of videos that create and raise awareness of the plight of individuals with neuroendocrineimmune disorders such as chronic fatigue syndrome CFS), fibromyalgia (FM), Gulf War syndrome (GWS) and multiple chemical sensitivities (MCS). The selected winners will be used as part of our international outreach campaign to raise awareness to these illnesses.

It is estimated that when combined, these illnesses affect over 20 million Americans. The economic impact on our national economy is considerable, with billions of dollars lost due to loss of productivity. (Source: Centers for Disease Control & the National Institute of Health) Other country’s economies are feeling similar impact.

One video will be chosen for each of the following categories in the languages listed below for dissemination worldwide:

Please click here to read the entire press release dated October 11, 2006.

Please submit your videos to http://www.youtube.com/group/pandoravideocontest where they can be uploaded for viewing. Contest will run from Oct 11, 2006 to November 30, 2006, 9:00 pm Eastern Time. Click here to sign up to vote for your favorite video. A few PANDORA members have signed up but we need many more to participate in this contest. Don't miss an opportunity to have a voice and to make a difference!

Our sincere gratitude!

We are grateful to Dr. Kenneth Friedman, current CFS Advisory Committee Member and a distinguished professor at the University of Medicine and Dentistry of New Jersey for disseminating our video contest to the medical students at the University. Dr. Friedman also contacted the New Jersey CFS Association and they have posted our announcement on their web site too.

OFFER, a non profit organization organization founded by Dr. Lucinda Bateman, will also disseminate the contest on the web site of OFFER. The more we disseminate about this great outreach advocacy event, the more interest will generate. We appreciate the support of these amazing people and organizations!

Amazing response!

We already received several e-mails from caregivers and patients who are excited about the contest. Some have already joined P.A.N.D.O.R.A.'s group online. We sincerely appreciate their involvement. You too can join by clicking here.

One amazing e-mail sent to us was from England. The writer mentioned that our International Advocacy Video Contest inspired him and his wife to create a video dairy of the heartbreaking hurdles a caregiver for a CFS/ME patient will experience. This is the type of response that provides the fuel, the focus and the motivation for our organization to remain active. Marly Silverman, the founder of P.A.N.D.O.R.A was gratefully touched by their e-mail and hopes that the contest will create strong awareness of the plight of persons with neuroendocrineimmune disorders in the United States and abroad. (PwNEIDs). Click to join the group and to vote for your favorite video.

NEW! ONGOING ACTION ALERT FOR 2006

We are also very proud of our partnership effort with the American Pain Foundation who is behind the campaign giving us the technological support and the expertise behind our action alert. These efforts have been in the works since the beginning of the year and we believe it will provide a huge boost to our advocacy work. Be sure to join us in the efforts explained below if you are visiting our web site and you did not receive our e-newsletter. The Action Alert is a first of a series. We are sincerely grateful to the American Pain Foundation. We hope you will be able to write them a thank you note letting them know of how appreciative we all are for their involvement.

ACTION ALERT

Dear Florida APF Members and Friends,

P.A.N.D.O.R.A., Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc., is seeking your help in establishing a Neuroendocrineimmune Center of Excellence in Florida and to raise awareness for chronic fatigue syndrome, fibromyalgia, and Gulf War syndrome. P.A.N.D.O.R.A. filed an appropriations request in the amount of $1.5 million dollars for fiscal year (FY) 2007 with the offices of U.S. Senators Mel Martinez (FL) and Bill Nelson (FL) for the establishment of the center.  The request was on the bill for the Budget of Labor, Health and Human Services for FY 2007.

Unfortunately, the appropriation request was not included in the Senate language in the Report of the Appropriations Committee.

If you are a neuroendocrineimmune patient, a family member or a caregiver for someone with chronic fatigue syndrome, fibromyalgia, Gulf War syndrome, or related illnesses, you know how important a Center of Excellence is for our community of suffering in Florida and beyond.

We need your help!

We are requesting you contact U.S. Senators Mel Martinez and Bill Nelson today to let them know that although we appreciate their efforts, the lack of funding for P.A.N.D.O.R.A.’s appropriations request is a major setback for our community of suffering.  Specifically, we are asking the Senators to request the support of Secretary of Health, Michael Leavitt, and the director of the National Institute of Health, Dr. Elias Zerhouni, for the Center of Excellence and for increased funding for chronic fatigue syndrome research.

P.A.N.D.O.R.A. will follow up on future efforts in pursuing the Florida Neuroendocrineimmune Center of Excellence, including filing another appropriations request through their offices for FY 2008.  However, Please Act Now to let the Senators know of the support that exists in Florida for this center!

To have APF send a fax (with a space for your personal message) to the Senators for you, please CLICK HERE.

If you prefer to instead to make a phone call to Senators Nelson and Martinez, CLICK HERE for their numbers and a suggested message. Please log your call (the option to log your call will appear after you are given the phone numbers) and let us know you took action!

Thank you for your help!

Sincerely,
P.A.N.D.O.R.A., Inc. and the
APF Mobilization Team

Background Information:

The Florida Neuroendocrineimmune Center of Excellence would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment, and clinical research of persons with Chronic Fatigue Syndrome (CFS) and related illnesses. The establishment of five (5) centers of excellence in the United States was the number one recommendation from the Chronic Fatigue Syndrome Advisory Committee (CFSAC), in their letter dated August 23, 2004 to Secretary of Health Michael Leavitt. The CFSAC is a committee chartered by Congress to recommend and shape national policy for CFS. 

Our community knows fully well that there is a dire need in Florida for physicians who are trained to treat chronic fatigue syndrome and other neuroendocrineimmune disorders.  Millions of Americans who have chronic fatigue syndrome and fibromyalgia are in a healthcare crisis, with no qualified access to physicians for appropriate treatment. The situation is highly critical for the 240,000 Floridians suffering with CFS; there is only one CFS specialist in the state of Florida, and it takes two to three years to get an appointment. This scenario is commonly repeated in all 50 states. Fibromyalgia patients are in the same situation, especially in rural areas. 

Among the neuroendocrineimmune disorders, CFS has experienced the most neglect.  It has been underfunded and ignored. Fibromyalgia follows right behind it.  A center of excellence would considerably improve qualify of life for CFS patients, thus enhancing potential and early recovery from CFS and other neuroendocrineimmune disorders. 

It is important that Senators Nelson and Martinez are aware of the substantive and significant impact a "Florida Neuroendocrineimmune Center of Excellence" will have in our state and what it means for 240,000 Floridians (according to the latest CDC figures of 4 million Americans estimated to be suffering with CFS) and to an estimated 17 million Americans suffering with neuroendocrineimmune disorders including fibromyalgia, Gulf War syndrome, multiple chemical sensitivities, and related illnesses. Too many lives have been lost to the desperation, abandonment, and trivialization that neuroendocrineimmune disorders receive by many in the medical community; and from employers and individuals who are not aware of the financial, physical and emotional impact these illnesses bring to persons and families in Florida and beyond.

P.A.N.D.O.R.A. will follow up on future efforts in pursuing the Florida Neuroendocrineimmune Center of Excellence, including filing another appropriations request through their offices for FY 2008.

There is much to be done in our efforts to ensure that increased research funding for chronic fatigue syndrome and for fibromyalgia becomes a reality. Please join me in these efforts.

PLEASE ACT NOW

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Rebecca Artman, CFS Advisory Committee member and Vice President, P.A.N.D.O.R.A. with Marly Silverman, Founder of P.A.N.D.O.R.A., in front of the the Department of Health and Humans Services Building, Washington DC.

August 24, 2006 - Assistant Secretary for Health attends July CFSAC meeting - Short account of his presentation to the CFS Advisory Committee

Dr. John Agwunobi, Assistant Secretary for Health for the Department of Health and Human Services (DHHS), attended the July 2006 Chronic Fatigue Syndrome Advisory Committee (CFSAC). Dr. Agwunobi stated, "It has become clear to me that I need to become personally involved". He then proceeded to make the following promises and commitment to the CFSAC.

1. I commit to attend more than half of the meetings that you hold in person between now and the end of my tenure.
2. I commit to making sure you have a full time executive secretary, meaning the secretary will be one person who works with you.
3. I commit to making sure the charter is re-chartered in an expeditious manner. A part of the re-chartering it should include adding new committee members if that's what's needed and identify a new chair.
4. I commit to make sure that when recommendations are made that they will be put before the Secretary in an expeditious manner and that a reply be given in an expeditious manner.
5. I promise that as part of the re-chartering, we will put together some sort of written response to the recommendations that summarizes all of the work that is being done in relation to your recommendations and speaks to those that aren't being done in a written format that will come to you as part of this re-chartering committee.

Dr. Agwunobi advised the committee to make annual or bi-annual reports to the Secretary that is to include continuing recommendations, and new recommendations. Click here to visit the DHHS web site for complete detailed information on the CFS Advisory Committee.

July 27, 2006

P.A.N.D.O.R.A. CONCERNS

The list of our concerns addressed on our July 13, 2006 letter to Secretary Michael Leavitt was addressed one by one, by Assistant Secretary Dr. John Agwunobi who made a very positive presentation at the July 17, 2006 CFS Advisory Committee Meeting (CFSAC). He begun his presentation by "speaking from the heart" and apologized that the CFSAC's recommendations and concern were not addressed with the care necessary by officials from the Department of Health and Human Services.

He stated that he would personally attend more than half of the CFSAC yearly meetings and that he would do his best to make sure the committee administrative requirements would be met efficiently.

I am pleased to report that our request to meet with Dr. John Agwunobi's office was answered. I met with his Senior Adviser and Chief of Staff, Mr. Philo Hall on July 18, 2006 at 9 am. Our discussion included all of the concerns I expressed in the July 13, 2006 letter to Secretary Leavitt, as well as other items that were not mentioned in the letter. We have a long list of issues that will affect adversely the future of CFS patients if they are not persistently addressed and pursued through advocacy. I will share them with you later, in a subsequent newsletter. But for now I wanted to ensure everyone that we are keeping an eye on all issues pertaining to the patient community. There is much to be done!

One very important result of my trip to Washington DC includes the Advocacy Alert Call For Action! we are issuing in partnership with the American Pain Foundation, which will allow us to use a virtual grass roots advocacy web page to send our message to Capitol Hill in the most efficient and technological way. We are grateful for their willingness to help us and we hope this Call For Action! will energize our community. Please visit our web site on Monday July 31 so you can be part of a 3 part advocacy effort.

NEW!  July 13, 2006

Advocacy Alert - Call to Action!

Today we posted an Advocacy Alert on Co-Cure asking the CFS community to send letters to our congressmen in regards to the lack of response from the office of Secretary Michael Leavitt, of the Department of Health and Human Services to the 11 recommendations from the CFS Advisory Committee. We are asking that you include our letter along with yours. Click here to see the letter I will be hand delivering to Secretary Leavitt on July 17, 2006.

The list of our concerns will be also included on the letters which I will present to the congressmen I will be visiting on Tuesday July 18 for a mini Lobby Day to pursue the establishment of the Florida Neuroendocrineimmune Center of Excellence.

Both issues are of tremendous importance to our community. I urge you to please do what you can and to help us to deliver a message that is strong and united.

June 28, 2006

CFSAC CHARTER RENEWAL

Rep. E. Clay Shaw has sent a letter on behalf of PANDORA members to Secretary Leavitt supporting the charter renewal of the Chronic Fatigue Syndrome Advisory Committee which is due to expire on September, 2006. Please send him a sincere thank you to him and to his staff for his support of the CFS community. We met with his office staff during P.A.N.D.O.R.A. and the CFIDS Lobby Days on May 9-11, 2006. I am also pleased to say that he represents the district where I live.

We will also re-nominate the same individuals that have not been chosen to participate in this committee. In addition to these outstanding individuals, we will also nominate Dr. Nancy Klimas and Pat Fero (Wisconsin CFS Association and P.A.N.D.A).  We are waiting on the announcement of another individual whose name was also among the many nominated last year. It remains unknown if he or she was among the names of the ones P.A.N.D.O.R.A. nominated. Nonetheless, we are pleased to see that the new members to the CFS Advisory Committee are well versed on the issues affecting our community of suffering.

As many of you are already aware, P.A.N.D.O.R.A.'s Vice President, Rebecca Artman is now one of the new members of the CFS Advisory Committee. We are very proud of her accomplishments. Her dedication to advocacy issues has given her this distinguished opportunity to truly make a difference! Artman's first meeting attendance was held on April 25, 2006. Please go to the CFIDS Association web page for additional information on the meeting highlights.

NEW!  June 28, 2006

P.A.N.D.O.R.A. is among the 100 organizations supporting The National Pain Care Policy Act of 2005 (H.R. 1020). Go to the American Pain Association Online Action Center for complete update.

For now they have reported to us that 52 House Offices and 2 Senate offices attended the congressional briefing held on June 13, 2006. Among the House Offices staff represented at this important briefing was the staff from Rep. Robert Wexler, Florida (D), 19th District.  If you are from his office district please give Rep. Wexler a call or send him an e-mail thanking his office for participating in the event.  Back in May when we visited with some members of his wonderful staff- Eva Cargil and Todd Adams, this issue was part of our "ask" and information was inside the advocacy package we left behind for their reviewing.  We sincerely appreciate their attendance at the Congressional Briefing on Pain. We hope that the results of this briefing will bring change to a much needed National policy in pain issues.

P.A.N.D.O.R.A. encourages you to contact your Congressional Representatives and ask them to co-sponsor The National Pain Care Policy Act of 2005 (H.R. 1020.). We need to enlist every congressmen in Capitol Hill to support this bill.

NEW!  June 28, 2006

P.A.N.D.O.R.A. filed an appropriation request for FY 2007 for the Neuroendocrineimmune Center of Excellence of Florida. The Excellence program used by the National Institute of Health (NIH) provides an opportunity for collaborative research, teaching, and treating of an illness. Last fall the Chronic Fatigue Syndrome Advisory Committee (CFSAC) submitted a list of recommendations for Secretary of Health, Mike Leavitt. That list included establishing five Centers of Excellence for the treatment of Chronic Fatigue Syndrome. We will advocate for all 11 recommendations by the CFSAC. We will also look closely at the NIH Road Map Initiative as a way to implement increased CFS research funding.

As you know the Senate 2006 final bill has language directing the Department of Health and Humans Services to address the lack of funding for CFS research. We will continue to push for additional language supporting Neuroendocrineimmune Disorders and we will continue to support the efforts of the CFIDS Association and other organizations with similar goals and objectives.

We will also support the efforts of the Wisconsin CFS Association who is looking into the research criteria and on the names of physicians/researchers who are part of the panel that reviews submissions for CFS research grant at the NIH. We have voiced the same concerns every time we attend the CFS Advisory Committee meetings in Washington DC. The fact that there are no CFS researchers among the list of 30 in this panel of reviewers is troublesome.  Click here for the panel reviewer's list & credentials.

Pat Fero, Executive Director for the Wisconsin CFS Association, is spearheading these efforts and recently contacted us, so we can collectively address these concerns. The CFIDS Association has consistently voiced their concerns on the same issues. The CFS research panel like any other reviewing panel ought to include and require panel researchers who are well versed with CFS research work or treatment of CFS patients. Their credentials should reflect outstanding knowledge of CFS.

We want scientific research for CFS to be of outstanding quality. We understand the multi- symptoms and multi systems concept and its approach and we welcome researchers from other scientific fields. Nonetheless, the lack of CFS researchers in the CFS reviewing panel continues to raise valid concerns in our community.

We will also make a priority in 2006 to contact Florida State legislature members to address issues which are of concern to Florida. Demographics and prevalence of Neuroendocrineimmune Disorders deserve funding and treatment facilities to accommodate this large segment of the Florida population. In S. Florida there is now only one physician specialist treating CFS patients. Only a handful of rheumatologist treating Fibromyalgia who are truly knowledgeable. We hope to engage the Florida State legislature in our efforts for the establishment of the Neuroendocrineimmune Center of Excellence of Florida as well as engaging corporate and private funding for this important project.

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