Letter to U.S. Secretary of Health from P.A.N.D.O.R.A.
  • Petitioned Mrs. Kathleen Sebelius

This petition was delivered to:

U.S. Secretary of Health & Human Services
Mrs. Kathleen Sebelius

Letter to U.S. Secretary of Health from P.A.N.D.O.R.A.

    1. Petition by

      PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV

IMPORTANT NOTE: MAKE SURE YOU COMPLETE YOUR PROFILE ON CHANGE.ORG TO ENSURE YOUR VOICE IS HEARD AND YOUR NAME/SIGNATURE WILL BE DISPLAYED ON OUR LIST.

CALL TO ACTION

PANDORA REQUESTS U.S. SECRETARY OF HEALTH KATHLEEN TO MEET WITH US AND ADDRESS THE LACK OF PRIORITY AND FUNDING IN THE UNITED STATES FOR SCIENTIFIC RESEARCH AND OTHER RELATED PROGRAMS FOR CHRONIC FATIGUE SYNDROME (CFS) ALSO KNOWN AS MYAGIC ENCEPHALOMYELITIS or ENCEPHALOPATHY (ME). 

 
It is estimated that 20 MILLION AMERICANS are stricken by NeuroEndocrineImmune Diseases such as chronic fatigue syndrome (CFS)-myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS-I), multiple chemical sensitivity (MCS) and chronic Lyme disease (CLD).

The U.S. Secretary of Health and Human Services, Kathleen Sebelius states on her web page that "Our goals for all Americans is to live healthier, more prosperous, and more productive lives." This is the same goal of P.A.N.D.O.R.A. for individuals stricken with NeuroEndocrineImmune Disorders, and yet for the past 7 years all of the recommendations o the Chronic Fatigue Syndrome Advisory Committee has made to past and current U.S. Secretaries of Health have not been executed. Not a single ONE recommendation has been put in place. Why not?

Click here for our latest Press Release Call to Action on this subject, dated August 25, 2010 - http://www.pr.com/press-release/258171

 

SISTER PETITION ON FACEBOOK

This is the sister petition for the petition already posted on the NeuroEndocrineImmune (NEI) Center(tm) Cause-Project, on "Causes" on Facebook. The NEI Center(tm) is a project of P.A.N.D.O.R.A. - Patient Alliance For NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc. in partnership with the Lanford Foundation-Lifelyme (tm), Inc and other patient groups.

As of September 27, 2010, the Facebook sister petition is 2,219 signatures strong.  We have been asked by many of our supporters to bring a sister petition to another site. 
We did an we have also edited this petition to reflect the changes since we started the one in Facebook.  

REASONS TO SUPPORT AND SIGN THE PETITION

When you sign this petition you are supporting P.A.N.D.O.R.A. and its collaborative partners in getting a response from the Office of the Secretary of Health for a meeting with the U.S. Secretary of Health & Human Services, Mrs. Kathleen Sebelius to ensure her support for aggressive and substantial funding for the NEI Center(TM) and other similar facilities throughout the U.S. and as well as the other items listed on our letter to the U.S. Secretatry of Health. Please sign this petition today and forward to your friends and family. We can no longer ignore the physical, financial and emotional toll that these illnesses take on the fabric of communities across the U.S.

Patient with NEIDs deserve the same quality of life and investment dollars in scientific research and patient medical care, that their neighbors and other individuals with other illnesses are currently experiencing and receiving. The time for change is NOW. Sign off on this petition and make sure you get at least 5 people to sign off too.Thank you for participating in this amazing grass roots effort. We need your support now more than ever!

In Good Health and In Beauty,
Marly C. Silverman,
Founder, P.A.N.D.O.R.A.- Patient Alliance For NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc.

Recent signatures

    Supporters

    Reasons for signing

    • Teri Cabana RICHMOND, VA
      • over 3 years ago

      I'm alive but not living - like this for over a decade. I've been losing my life, since the age of 25. Honestly, I'd rather be dead. I have chronic Lyme disease, chronic fatigue syndrome, and ME. I was able to almost get a Master's in BioStatistics...to help research such things...and then my brain went foggy. I get lost driving some days; other days can do rigorous math. Most days, I can't do anything at all but stare out the window. Please...please...please help me. I'm only 35 now. The 90+ WWII vet across the street is so much healthier than me. The 80's aged folks next to them I chat with...they have cancer...we have so much life quality in common. HELP ME.

      REPORT THIS COMMENT:
    • Diane Claghorn CARMEL, IN
      • over 3 years ago

      What would be the purpose of designating a committee of experts to make recommendations and then not following any of them...for years!? Is it inefficiency, incompetence, cruelty, or some other agenda? My son has been ill for 6 years and at 20 is missing out on life. Please consider the seriousness of our request. Thank you.

      REPORT THIS COMMENT:
      • over 3 years ago

      I want to thank everyone who has signed on this petition addressed to the Secretary of Health - Mrs. Kathleen Sebelius. This is the sister petition that is now on our Facebook Causes pages supporting the NeuroEndocrineImmune Center. Mrs. Sebelius office has replied to us that due to her heavy schedule she is not able to meet with us. While we understand the hectic schedule she might have, it does not change the fact that an estimated 20 millions Americans are stricken by NeuroEndocrineImmune Disorders. For them their time has stood still and for many as long as 3 decades - of suffering from heartbreaking and with a devastating and disabling, life-altering illnesses, which take a financial and physical toll. There is no quality of life for these individuals!

      Help us to send a message to Secretary Sebelius that the plight of Americans stricken with NEIDS can no longer be ignored. Join our May Awareness week and Lobby Day in DC coming soon and let us send a strong message that we are One Voice, One Community, One Cause! - Invisible no More! Thank you for all that you do.

      Marly Silverman, Founder, PANDORA

      www.pandoranet.info.

      Visit us on Facebook. Follow us on Tweeter.

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    • Brigette Schulz AURORA, CO
      • over 3 years ago

      Fibromyalgia is a life changing disease. Anyone living with disease knows; that on a Friday you could be walking with child in the park enjoying your life as you have for many years. Then on that following Saturday morning your life has been turned upside down. You can't get out of bed, because you can't move. You may have thought you had a stroke. But the problem is in your neck; the pain is so severe that all you want to do is die. You go to your doctor; then to your surgeons. To your surprise and fright you find out that you have to have a complete neck fusion with stem cells to stimulate new bone growth in your neck. At first you think all is well, but then you find out that you have a virus that has attacked your spine. And the Ekkers test responds a positive. There is so much pain and confusion and anger. That all you can do is cry. I have been up and down. And "I WANT MY LIFE BACK! It is hard to explain to my 7 year old that I am in pain, and that I am sorry that I can't be his Cub Scout Leader anymore. I have much more I could add to this, but it would become a book. If you do suffer from any of these chronic diseases; you can't understand. Please help us become the healthier Americans. So we can go out in our community and make a difference for the people who can't do it for themselves. A recommendation needs to be set fourth. Help us, so we can help ourselves, so we can help others. God bless the ones who listen!

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