Morgellons Research Foundation: To CDC

[Guest guest]

" 121 " <121

Fri, 19 May 2006 22:33:47 -0800

Centers for Disease Control and

Prevention (CDC) RE: Morgellons

 

 

 

 

 

http://www.morgellons.org/casedef.html

 

 

Morgellons Research Foundation

A nonprofit organization

P.O. Box 16576

Surfside Beach, SC 29587

 

Centers for Disease Control and Prevention (CDC)

Morgellons Research Foundation

February 14, 2006

 

CASE DEFINITION - MORGELLONS DISEASE (DRAFT)

 

The following case definition of Morgellons disease has been developed

by physicians on the medical advisory board of the Morgellons Research

Foundation. This case definition is a preliminary and evolving

document, now updated for review by the Centers for Disease Control

and Prevention (CDC). This document will be refined as further

information becomes available and as members of the medical advisory

board deem necessary.

 

The Following Six Signs or Symptoms Are The Basis of Morgellons Disease

 

1. Skin lesions, both spontaneously appearing and self-generated, with

intense itching. The former may initially appear as " urticarial-like " ,

or as " pimple-like " with or without a white center. The latter appear

as linear or " picking " excoriations. Even when not self-generated,

lesions often progress to open wounds that heal abnormally and usually

incompletely. (e.g., heal very slowly with discolored epidermis or

seal over with a thick gelatinous outer layer.)

 

2. Crawling sensations, both within and on the skin surface. Often

conceptualized by the patient as " bugs moving, stinging or biting "

intermittently. Besides the general dermis, may also involve the

scalp, nares, ear canal, and body hair or hair follicles. The

sensations are at times related to the presence of easily seen

insects, arthropods, and other human and non-human associated

parasites that require serious attention from the observing clinician.

 

3. Fatigue significant enough to interfere with the activities for

daily living.

 

4. Cognitive difficulties, including measurable short term memory and

attention deficit, as well as difficulty processing thoughts

correctly. Described by patients as " brain fog " .

 

5. Behavioral effects are common in many patients. Many have been or

will be diagnosed as Attention Deficit Disorder, Attention Deficit

Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive

Disorder. A minority do not show this pattern. Almost all, if

previously seen by well-read physicians without prolonged observation,

will have been labeled as " Delusional Parasitosis " . Temporal

relationship to skin lesion onset is not known.

 

6. " Fibers " are reported in and on skin lesions. They are generally

described by patients as white, but clinicians also report seeing

blue, green, red, and black fibers, that fluoresce when viewed under

ultraviolet light (Wood's lamp). Objects described as " granules " ,

similar in size and shape to sand grains, can occasionally be removed

from either broken or intact skin by physicians, but are commonly

reported by patients. Patients report seeing black " specks " or " dots "

on or in their skin, as well as unusual 1-3 mm " fuzzballs " both in

their lesions and on (or falling from) intact skin.

 

OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS

 

1. Change in visual acuity.

 

2. Numerous neurological findings. A variety of neurological symptoms

have been reported. Some patients have been diagnosed with Amyotrophic

Lateral Sclerosis, Multiple Sclerosis, and other well-known and

recognized disorders, while others display significant symptoms not

falling into any well-defined neurological category.

 

3. Gastrointestinal symptoms, which may include dyspepsia,

gastroesophageal reflux, and/or changes in bowel habits often similar

to Irritable Bowel Syndrome.

 

4. Neuropsychiatric symptoms and signs, ranging from mood or

personality changes to diagnosed disorders including Attention Deficit

Disorder, Bipolar Disorder, Obsessive Compulsive Disorder and

occasionally frank psychosis. Temporal relationship to skin lesion

onset is not known

 

5. Acute changes in skin texture and pigment. The skin is variously

thickened and thinned, with an irregular texture and irregular

hyperpigmentation pattern. The changes resemble age associated

sun-exposure skin damage, but typically appear acutely

 

6. Skin examination often reveals excoriated and/or crusted lesions

which, on examination with lighted magnification, are seen to have

inclusions of variously colored (white, blue, black, or red) fibers.

Skin examination may also reveal multiple hyper-pigmented macules, and

an increase of what appears to be villous hair on arms and face.

 

7. Arthralgias are reported by many patients.

 

8. Associated diagnoses which have been commonly reported in this

patient population include Borreliosis (better known as Lyme Disease),

Fibromyalgia, and Chronic Fatigue Syndrome.

 

OTHER COMMONLY REPORTED OBSERVATIONS

 

1. Most patients will have sought care from multiple medical care

providers. A large number will have been diagnosed with Delusional

Parasitosis likely because of the juxtaposition of unexplained skin

lesions and sensations and psychiatric overlay. Unfortunately, almost

none will have received an appropriate diagnostic physical examination

(particularly a microscopic or biopsy examination of lesions), but

will have been diagnosed by history alone with grossly incomplete

observation.

 

2. Most of these patients feel abandoned by the traditional medical

care system and have sought alternative care providers or have self

medicated, seriously compounding an already difficult medical situation

 

LABORATORY AND OTHER DIAGNOSTIC EVALUATION

 

To date, there have been no formal laboratory or imaging studies done

in this patient group. There are some reasonably consistent clinical

findings, however, that need further examination, in controlled

studies, to be corroborated or refuted.

 

REVIEWED BY:

 

William T. Harvey, MD, MPH

Michael Ledtke, MD

Ginger Savely, RN, FNP-C

Raphael B. Stricker, MD

Gregory V. Smith, MD, FAAP

 

Medical Advisory Board

Morgellons Research Foundation

 

Register | Request info | Physicians Only | Nurses | Volunteer Page