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Definitions-Description

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
  • Accurate descriptions
  • 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.
ME/CFS:
In 2013, the Office of Women's Health contracted with the Institute of Medicine to develop a clinical definition criteria for ME/CFS. Check out our position and activities concerning this.

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.

In 2011, we sent a letter to the incoming CDC CFS department head that said the CFS criteria needed to be changed. Success- the CDC is doing a study to determine disease characteristics for defining it better.

In 2012, we sent a letter to the American Family Physicians website editor saying their description of the disease is outdated and inaccurate.

Fibromyalgia:
We also agree with the National Fibromyalgia Association that the new American College of Rheumatology fibromyalgia criteria is not in the best interests of the patients.

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