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Position Statement

Funding:
NEIDs research is underfunded. The disparity of government funding for NEIDs research — compared to other chronic, disabling diseases — is inexcusable. Research is the key to alleviating patient suffering. We support parity in funding for NEI diseases.

Research Types:

We support biomedical research that will lead to effective treatments and 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 these diseases.

This leaves physicians and patients without a complete understanding of how to improve the quality of life for patients with NEIDs. As we see more biomedical research, the understanding of these diseases is increasing.
See more.

Centers:
We support the creation of centers of excellence that include research and patient care services under one roof for neuro-endocrine-immune diseases together.

Last update: October 4, 2014
Names:

We support names for NEIDs that are accurate, reflect the biological abnormalities and the severe impact the illness has on patient lives. See more.

Disease Definitions: We support disease definitions that distinguish these diseases from other conditions that have similar symptoms. All efforts should be made to find biomarkers for these diseases. See our advocacy activities related to disease definitions, including our efforts to influence the Institute of Medicine committee on a new ME/CFS clinical definition.

Classifications:

NEIDs have formerly been put into diagnostic classifications that causes confusion with other conditions. However, the body of research in these diseases leaves no doubt that these diseases disrupt multiple body systems in patients. Therefore, we support classifying these diseases under multiple-system diseases or under the primary body system affected. See more.

Treatment:
We support educating physicians on the best treatments based on specialist observations and peer-reviewed studies using patient criteria that excludes those with other diseases. We also support public health policies that do not limit chronic pain patients from medications they need to relieve suffering.

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