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To bring attention to the need for policy
changes, PANDORA advocate
extraordinaire Evelyn Boyles successfully
got the city of Pembroke Pines, Florida
to pass a resolution in recognition
of NEIDs Awareness Day in May 2009.
A policy is a temporary
creed liable to be
changed, but while it
holds good, it has got
to be pursued with
apostolic zeal.
- Mohandas Gandhi
Funding:
NEIDs research is underfunded. The disparity of funding for NEIDs - compared to other chronic, disabling diseases - cannot be tolerated any more. Research is the key to alleviating the suffering. PANDORA supports parity in funding for NEI diseases.
Research Type:
PANDORA supports biomedical research that will lead to effective treatments and hopefully cures for NEIDs. For too long, due to the lack of scientific knowledge and technology limitations, NEIDs research has been in areas that have not advanced the understanding of the biological pathogenesis of some of these diseases. This leaves physicians and patients without a complete understanding of how to improve the quality of life for patients with NEIDs.
Name:
PANDORA supports names for NEIDs that are accurate, reflect the pathogenesis and the impact the illness has on patient lives.
Classifications:
NEIDs have formerly been put into classifications that leave more questions than answers. However, the body of research in these diseases leaves no doubt that these diseases disrupt multiple systems in patients. Therefore, PANDORA supports classifying these diseases under multiple-system diseases or as a disease of the primary body system affected.
- PANDORA's comment letter to the National Center for Health Statistics that CFS be moved to the same category as ME in the ICD-10-CM. See a copy of the Coalition 4 ME/CFS proposal.
- Letter to the American Psychiatric Association against the proposed complex somatic symptom disorder criteria in the DSM-5 - June 2011
- Letter to American Psychiatric Association against the proposed complex somatic symptom disorder criteria in the DSM-5 - April 2010.
Treatment:
PANDORA supports educating physicians on the best treatments based on specialist observations and peer-reviewed studies.
Centers:
PANDORA supports the creation of centers of excellence that include research and patient care and services under one roof. Creating such a center is PANDORA's primary project.
| HEALTH CONDITIONS LIBRARY | ADVOCACY & AWARENESS |
CDC PETITION |
ABOUT THE NEI CENTER |
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PANDORA is strong on advocacy and awareness to improve the quality of life of those with NEI diseases. This is being accomplished through multiple approaches: • Educating the public about NEIDs • Educating physicians about the true nature of NEIDs • Advocating for state and national governments to increase research into NEIDs • Advocating for government health policies that will improve the quality of life of NEIDs patients. Read More > |
telling the CDC they need to make changes to their CFS research program. The CDC has already made some progress by meeting with patient organizations and working with other ME/CFS clinicians and researchers. They have started the process of refining the CFS diagnostic criteria. But much more is needed. They have a long way to go. |
The (NeuroEndocrineImmune) NEI Center will be the first research center of its kind. Patients will benefit from cutting-edge research and clinical care. It will have the computer-aided disease diagnosis and treatment (CADDT) system, which will be specifically designed for multi-system illnesses and complex diseases. Assistance in accessing social services will also be offered so that patients will feel better, live longer and have an improved quality of life. For more information, visit the NEI Center website. |
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