Important Update:
According to an official at the NIH Undiagnosed Diseases Program, during a telephone conversation with the Director of the MRF on August 27, 2008, a decision has been made at the NIH that patients with Morgellons disease will not be accepted into this program. We sincerely apologize for this situation, especially for those of you whose physicians already submitted your information to this program.
MRF
NIH Undiagnosed Diseases Program
The NIH Undiagnosed Diseases Program is a pilot program aimed at answering questions about medical conditions which have eluded diagnosis. Please note that patients with an undiagnosed disease can be considered for this special program by being referred to NIH by their physician or health-care provider. Please see buttons below for additional details on this program including strict eligibility requirements.
The CDC recommends that physicians with Morgellons/Unexplained Dermopathy patients contact their local or state public health departments. CDC further recommends that since there may be a great deal of variability in where physician inquiries are handled within a given Health Department, it is reasonable for the physician to start with the communicable diseases or environmental health units/divisions at the local or state Health Department.
This foundation is frequently contacted by clinicians seeking treatment advice for patients believed to have Morgellons disease. Unfortunately, at this time there is no generally accepted treatment for this disease, although antibiotics, anti-parasitics and anti-fungals have been helpful to some patients (see our FAQ section for more information).
Message from William T. Harvey, MD, MPH, MS, MRF Medical Director:
As clinicians, we presently characterize an illness by its time course (history and symptoms), observable physical abnormalities (signs), technical measurement aberrancies (lab, EMG, etc.). Curiously, although Delusions of Parasitosis (or DP, which can be a misdiagnosis for patients with Morgellons disease) has been in common use for decades; few such facts make up its definition. Such is not the case with Morgellons disease, as many elements of this disease have been collected and collated. Although the final case definition of this disease is still "in process", it includes patterns of abnormalities outside of the skin component. The typical diagnosis of Morgellons patients as DP patients has resulted in a strictly psychiatric label, and ineffective treatment. By simply avoiding the trap of assuming all the illness is psychiatric, any astute clinician will get a thorough history of all problems bothering the patient. The accompanying malaise, fever, measurable memory deficit, tachycardias, elevated fasting glucose and insulin, and elevated cytokines TNF-alpha and IL-6...among many others...will lead far from a solely psychiatric diagnosis.
This now becomes a primary battleground of the so-called “evidence-based-medicine.” Take care that, as thinkers and scientists, your search is via facts...as best we can find such...and not a few scattered unfounded assumptions focused on a single disease element.
Our power as physicians to resolve illnesses is our ability to think, not to cookbook our medicine. The latter is not evidence-based medicine. The truth, as it always has, sits in front of us.
Physicians may contact the MRF Medical Advisory Board here:
Letter to clinicians from Randy S. Wymore, Ph.D., and Rhonda Casey, D.O. at Oklahoma State University