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

Secretary Sebelius Take action on the CFS Advisory Committee recommendations since 2004!

Dear Secretary Sebelius,

PANDORA requests U.S. Secretary of Health Kathleen Sebelius to meet with PANDORA and other patient organizations and to take action on the CFS Advisory Committee recommendations since 2004, by addressing the lack of priority scientific research funding and other related programs for chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or encephalopathy (ME).

Dear Secretary Sebelius,
In 2009, we requested a face-to-face meeting with your or with a senior staff to address the lack of substantial funding for NeuroEndocrineImmune diseases (NEIDs). We also asked you to direct the National Institute of Health (NIH) to provide short & long-term research funding for CFS-ME, fibromyalgia, Gulf War syndrome, multiple chemical sensitivity & chronic Lyme disease. We also asked for a new direction and change of leadership be taken at the Center for Disease Control and Prevention (CDC) in their CFS program.

While since then a change in leadership has occurred at the CDC, and the NIH has presented the State of the Knowledge of the Science of ME/CFS, unfortunately your office has ignored the following items:
1) Our request for a face-to-face meeting with your office.
2) No funding has been prioritize and released for scientific research, clinical trials, nor funding for AHRQ for a revision of their 2001 "Management Assessment of Chronic Fatigue Syndrome Report" been updated, and no new Request for Applications (RFAs) from the NIH has been issued.
3) No similar significant funding priority process has been applied either towards fibromyalgia, a common a overlapping condition estimated to affect between 8 to 10 millions Americans (National Fibromyalgia Association and NIAMS).

Therefore we respectfully ask:

1) For a meeting with you with P.A.N.D.O.R.A.'s representatives, and with other collaborative representatives of other other organizations, and partners who are representing our major stakeholders- millions of Americans ,who for far too long have endured a lack of quality of life due to chronic fatigue syndrome, also known as myalgic encephalomyelitiis, often due also to the overlapping with other related chronic NeuroEndocrineImmune Diseases (NEIDs).

2) We ask you for aggressive allocation of resources for chromic fatigue syndrome/ME and for other NEIDs.
3) We also ask that you ensure substantial funding is allocated to NIH Centers of Excellence through the U.S. so projects like the NeuroEndocrineImmune (NEI) Center(TM) and other similar patient-drivem facilities in the U.S. can tap into the scientific funding process leading to scientific breakthroughs.
4) We ask of our Secretary of Health for crucial funding for physician training and such training to be provided through AHEC and other health agencies in partnership with community and patient advocacy organizations like P.A.N.D.O.R.A. and the NEI Center(TM). It is of utmost importance to ensure medical schools in the U.S. will partner with community and patient advocacy organizations on the task of educating their medical student, their academic professionals, and their current teaching medical faculty, as well as collaborating in much needed scientific research. No longer medical school staff can maintain such a bias against education for medical students and future researchers in the scientific field of NeuroEndocrineImmune Disorders.
5) We ask you also to address and resolve once for all the ICD10CM and ICD9CM coding of chronic fatigue syndrome by moving it to the neurological area of the ICD as suggested by experts. Despite at least 4 past recommendations of the CFS Advisory Committee, going back to 2003-2004, a panel of national and international experts from the ME/CFS scientific, research with one patient advocate on board, your office has not forwarded these recommendations to the appropriate offices resulting now in another 2-3 year wait for this change to occur.

Thank you for your attention to this matter. Please find our sister petition on Facebook at
https://apps.facebook.com/causes/petitions/409

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.

1Voice, 1Community, 1Cause!(TM)

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