Neuro-endocrine-immune diseases lack a widely accepted biomarker, meaning they are defined by a list of symptoms that, when seen together, identify a person as having the disease.
Because these diseases include symptoms seen in other diseases, NEIDs patients are often misdiagnosed, and most physicians lack a clear understanding of them. Only the experts who have focused on treating these patients understand them.
To improve this situation, we advocate for:
Better and more narrow disease definitions
Recognition of the biomarkers
Better definitions will lead to discovering and validation of distinguishing biomarkers.
It's the only way patients will be diagnosed accurately to receive the appropriate treatments.
Our organization signed the May 2013 NAAME letter to U.S. Secretary Kathleen Sebelius saying the definition confusion over ME/CFS needs to be addressed.
Along with other organizations and independent advocates, we have advocated that the CDC remove their CFS physician toolkit because its recommendations are based on patients that may have other fatiguing diseases. Success - In the May 2013 CFSAC meeting, the CDC said they will soon release a new toolkit, rewritten based on advocates' comments.