The Medical Advisory Board of the Morgellons Research Foundation (MRF) developed a Case Definition, the most recent revision of which is currently nearing completion. Until this more rigorous definition has been submitted for review, the much earlier case characterization (seen at bottom) will remain in place.
Following is the history of the MRF’s attempt to understand Morgellons disease.
Morgellons Disease is a label assigned by the founder of the MRF to the condition of an ill child in 2002 with numerous symptoms outside known illness categories. One physical sign became the “defining” characteristic of the illness: small diameter “filaments” protruding from lesions near the child’s mouth and other body areas that were both sensitive and painful. In searching for others who might have encountered the same phenomenon, the MRF was created. Its initial function was to convey details of the phenomenon to others, and simultaneously provide a central registration site to foster broader communication.
Although the initial attention of the MRF focused on filaments and movement, awareness of the other symptoms increased which broadened the presumed boundaries of the illness. This illuminated the possible degree of disability of those afflicted and made clear that Morgellons disease likely extended far beyond the “filaments” and dermal movement sensations, to include numerous other organ system effects. Initially the name Morgellons disease was only a rallying point for self-diagnosed people to compare symptoms and experiences. With time, the number of registrants and the magnitude of their data reached a level that revealed a more consistent pattern, and although virtually all remained self-diagnosed, more than one hundred physicians contacted the MRF about patients with similar symptoms. In addition, physicians, veterinarians, dentists, nurses, and other medical professionals contacted the MRF about their own illness, or about the illness of family members.
The first attempt to pool and characterize Morgellons data into a consistent pattern was made by a physician member of the MRF who evaluated information collected from fifty people who self-referred from the MRF site to a single medical clinic. It was noted that many of these patients had been previously diagnosed with a common medical label, Delusions of Parasitosis (DP), the basic tenet being this is a psychiatric illness with the presumption of a purely delusional “parasite infestation.” It was already clear by the time the first dozen patients had been extensively examined physically that they did not fit under that diagnostic label. All had evidence of actual parasite infestation, including comparison of typical skin lesions, onset history, sequence of organ system involvement, and expected organ pathology. The “filaments” were consistently observable and collectible, and laboratory data was collected on all, supporting an irrefutable immune deficiency state, chronic inflammation, and a complex picture of autonomic abnormalities. Medical histories clearly support that most symptoms of Morgellons disease precede emotional effects. Thus, it appears that Morgellons and DP are different illnesses.
Many clinicians sought out initially by patients, although formally trained and licensed, based their conclusions on the presumptions of others who had made the same presumptions in the 57 DP-titled papers in the NLM database from 1956 through 2007. Although some patients did find clinicians willing to help them, many patients reported feeling abandoned by physicians unwilling to investigate their illness. These patients tried valiantly to find a modicum of relief in the face of an otherwise ineffective medical system, and some became the target of fringe groups who occasionally promoted ineffective treatments for economic benefit.
The MRF chose to display the following clinical characterization from 2005, which has since been revised, of Morgellons disease. We know well that Morgellons disease has no formal Case Definition. However, all new definitions of human disease begin with patient observations and collected data. As the number of patients we have temporarily labeled Morgellons has grown in consistency and, counter to the DP concept, we present below a collation of all information collected from Morgellons patients until mid-2006 to create a MRF characterization of the illness. The following subsequent step will be a fact-based Case Definition.
THE MRF 2006 MORGELLONS DISEASE CHARACTERIZATION:
The Following Signs or Symptoms are The Basis of Morgellons Disease as defined by patients that fit within a consistent boundary that is also outside the boundary of other “known” diseases. The initial three characteristics parallel a much more entrenched illness, Delusions of Parasitosis (DP) named decades before today’s laboratory technology and infection/immunity knowledge, driven by HIV, developed. The more recent findings listed below provide a far broader and more consistent evidence base, strongly supporting the likelihood that DP is a prematurely assigned label to an organic, rather than purely psychiatric disease.
1. “Filaments” are reported in and on skin lesions and at times extruding from intact-appearing skin. White, blue, red, and black are common among described fiber colors. Size is near microscopic, and good clinical visualization requires 10-30 X. Patients frequently describe ultraviolet light generated fluorescence. They also report black or white granules, similar in size and shape to sand grains, on or in their skin or on clothing. Most clinicians willing to invest in a simple hand held commercial microscope have thus far been able to consistently document the filaments.
2. Movement sensations, both beneath and on the skin surface. Sensations are often described by the patient as intermittently moving, stinging or biting. Involved areas can include any skin region (such as over limbs or trunk), but may be limited to the scalp, nasal passages, ear canals, or face…and curiously, legs below the knees.
3. Skin lesions, both (a) spontaneously appearing and (b) self-generated, often with pain or intense itching. The former (a) may initially appear as “hive-like”, or as “pimple-like” with or without a white center. The latter (b) appear as linear or “picking” excoriations. Even when not self-generated (as in unreachable regions of babies’ skin), lesions often progress to open wounds that heal incompletely (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.). Evidence of lesions persists visually for years.
4. Musculoskeletal Effects and Pain is usually present, manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches and vertebral pain are particularly common, the latter usually with premature (e.g., age 20) signs of degeneration of both discs and vertebrae.
5. Aerobic limitation is universal and significant enough to interfere with the activities of daily living. Most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome as well (Fukuda, Ann. Int. Med., 1994). Cardiology data and consistently elevated heart rates suggest a persistent myocarditis creating lowered cardiac output that has been partially compensated for by Starling’s Law.
6. Cognitive dysfunction, includes frontal lobe processing signs interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries.
7. Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering.
OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS
1. Shifting visual acuity. Unexplained frequent need to change glasses prescription, perceived changes in visual field, and scattered and changing level of perceived light intensity.
2. Numerous neurological symptoms and clinical findings. A variety of neurological symptoms and signs have been reported. Common physical findings include abnormal Romberg, peripheral neuropathy in ALL (feet, and in some cases fingers), abnormal reflexes, verifiable, probably neuropathic pain and recurrent brain control abnormalities affecting motor function, circadian rhythm, body temperature and respiratory rate.
3. Gastrointestinal symptoms, often including dyspepsia, gastroesophageal reflux, swallowing difficulty, and changes in bowel habits (Similar to IBS or Crohn’s disease)
4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyper- OR hypo-pigmentation pattern. Overgrowth or hypergrowth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation).
5. Arthralgias. Frequently reported, although arthritis is not. Common joints are in fingers, shoulders, knees and vertebrae.
COMMON LABORATORY ABNORMALITIES
Elevated cytokines: TNF-alpha, IL-6, TGF-beta; elevated inflammation markers: C-reactive protein and TNF-alpha; Immunodeficiency markers: low CD 56 or CD 57 number, low C1Q, low IgG subclasses 1 and 3; hematological abnormalities: low hemoglobin and hematocrit with abnormal RBC indices; and biochemical abnormalities: elevated blood glucose, insulin, calcium, and serum Homocysteine, and low serum potassium and magnesium.
The consistent finding of numerous unexpected biologic agents at atypically high levels (some thought to be non-pathogens, others definitely pathogenic) strongly supports that an immune deficiency state exists in Morgellons patients. Agents identified serologically include many zoonoses (intermittently and in low numbers) such as Borrelia (at least five species) and Babesia, a single recently found gram negative bacterium, most herpes viruses, some strongly activated such as VZV and HHV-6, several mycology species (esp. Tineas), and particularly in those we have labeled Morgellons patients, parasites (species will be elaborated following PCR sequencing).