On 9/10/2007, the MRF web site was changed to reflect a new theory, supposedly about to be published, regarding filarial worms and other infections. The fibers were claimed to be from overgrowth of Actinomyces israelii. The next day this was all removed. For research purposes I have copied the 9/10 versions of three pages here:
Welcome to our website
The Morgellons Research Foundation (MRF) is a 501(c) 3 non-profit organization dedicated to raising awareness and research funding for a seriously misconceptualized illness that we have provisionally labeled “Morgellons disease“. The name Morgellons disease was borrowed as a temporary label by the biologist mother of a two-year-old boy who became chronically ill in 2001, one component of which was visible ‘fibers” protruding from facial skin. The eventual placeholder name came from (1) isolated attention to the skin lesions and (2) after realizing the boy’s illness did not fit the label Atopic Dermatitis given him by medical clinicians. In a search for others like her son, the biologist found that a third had been formally diagnosed with Delusions of Parasitosis. By 2002, after creating a website, she was contacted by patients from all 50 states as well as fifteen other nations reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF. Click here for more information about the disease.
Following a recent clinical database study of patients, the cause and treatment of Morgellons disease are now becoming known, as is the probable mode of transmission. We now know the disease affects people of all age groups, including children. Numerous family members are usually affected simultaneously, and epidemiology review suggests the disease appears to be spreading rapidly since 1980. (The number of families currently registered with the MRF, although large, is thought to represent a fraction of the true number affected.) The disease as we now know it to be, IS currently recognized by the medical community. It was erroneously labeled Delusions of Parasitosis, a name now poised to join the egregious dinosaurs of medical nosology (naming). Because of this misconceptualization combined with practitioner indolence, all patient symptoms had been assumed to be emotionally generated, with little attention to the skin or other organ systems. Curiously, NO serious search for parasites exists in the published medical literature. In order to rectify this medical error, the MRF is seeking contributions to fund private research to verify the newer conceptualization and cause of this disease and its complete cure. Click here for more information about the research.
Recently the CDC has taken a public stance regarding the still-undefined “Morgellons disease”. Fairly certain this position was engendered by political and patient pressure, we are nevertheless glad they are willing to review information on mostly self-diagnosed chronically ill patients, as we feel certain this will bring to light the full spectrum of illnesses represented by the Morgellons class of chronically ill persons. Following is a recently released CDC position statement finally divulging their awareness of the condition but without a plan to explore and define the true illness they are intending to address. Although it is highly unlikely the CDC will have moved beyond the initial RFP process when peer-reviewed papers reveal the nature, etiology and solution of this illness, we are pleased they are willing to explore it. There will always be a large amount of verification and clarification work to be done as well as medication optimization.
On August 1, 2007, the CDC published the following: “Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition. Persons who suffer from this condition report a range of cutaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. Moreover, some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation.” Click here for a sample letter you can send to the Department of Health and Human Services to ask them to expand their upcoming investigation.
Frequently Asked Questions
What is Morgellons disease?
Morgellons disease is a placeholder name for what has been called Delusions of Parasitosis (or DOP) until recently by the medical profession. The label was created from 15th century literature describing only unusual hair or fiber growth on a child and devoid of the many other symptoms and signs we now know to be associated with the chronic illness. The actual unnamed disease represented by the Morgellons label is vastly different from DOP. A recent systematic study of similar patients has unequivocally verified infection in most with more than one species of zoonotic Filaria and all with unexpected overgrowth of a common commensal bacterium, Actinomycosis israelii. Both are treatable. The second large illness component found in these patients is indeed an episodic delusional state and a verifiable high prevalence of bipolar disease. Review of available NLM data corroborates only that the presence of delusion has been assumed the genesis of imagined infestation with parasites without ever having considered or tested for parasites. Use of even a Mattel microscope would have revealed the Actinomycosis spread, and a simple CBC and CBC will show the elevated monocytosis, abnormal red cell indices, frequently elevated calcium and low potassium. Available, but more specific tests readily reveal elevated inflammatory markers, elevated cytokines confronting chronic infection, and a chronic immune deficiency state resulting in activation of most herpes viruses, many zoonoses, and of course parasites of a still unknown number and species. Physical effects are to skin, brain, peripheral nerves, cardiac conduction, autonomic nervous system function, and hormonal effect. Debilitating subjective symptoms include local or general chronic pain, chronic malaise, and unusual but nonetheless well-documented dermal inter-plane movement of Onchocerca volvulus.
A new Case Definition is in progress. Data was collected from sequential clinical cases and includes over 400 data points per patient from Medical History, Systems Review, Demographics, Vital Signs, and physical examination. Laboratory parameters address immune status, inflammation, basic organ function, and anticipated infectious agents (based on prior response to anti helmenthic and antibacterial antibiotics). As this information is in process for scientific journal submission, details will be generalized until editorial review is complete.
Why was the Morgellons Research Foundation established?
The Morgellons Research Foundation (MRF) was founded by the mother of a two-year old child with an unknown illness. When unable to find the proper help for her child, she labeled his illness “Morgellons disease” and established the MRF to raise awareness of the disease and funds for research.
Where did the name “Morgellons” come from?
The name comes from a condition involving “black hairs” emerging from the skin of children that was documented in France in the 1600’s. It is unknown whether that description is related to the illness we are now describing. However, the similarities were such that the name sufficed as a unique label for an illness not described by any other medical label, and became a much-needed niche for patients otherwise falling outside the present medical paradigm Delusions of Parasitosis.
What is it like to have Morgellons disease?
It is difficult to understand the tremendous suffering caused by this disease. Many patients report feeling abandoned by the medical community, as they experience increasingly bizarre, disfiguring and painful symptoms, while often being unable to receive medical treatment for their condition. A large number of patients become financially devastated and lose health insurance because they can no longer work. Most report feeling frightened and hopeless as the only treatment they are typically offered is psychiatric, which is completely ineffective for all components of the illness other than emotional.
Is it contagious?
Science must answer that question to be certain. However, most data obtained to date strongly suggest this possibility. Its’ mechanism does not appear simple or straightforward. Suggestive data include its appearance in many family members, the finding of parasites, activation of infectious herpes viruses, and low-level identification of antibodies to various zoonotic bacterial antibodies. Many infectious agents can, of course, be transferred by intermediate vectors such as flies. But lack of these expected vectors in many regions of prevalence suggest silent inter-human transfer. The most recent strong hypothesis suggests that an inter-human infectious agent, easily spread by droplet transmission is initially responsible for creating a chronic immune deficiency state. Only such a state might account for the extreme number and types of activated agents that have become measurable and chronic. Its movement is likely silent because of the time for second-agent expression. If highly similar other chronic illnesses turn out to be generated by this initiating agent, the numbers infected are already enormous, so attempts at avoidance near useless now.
What is the source of the skin lesions and fibers?
Presently, the fibers we now routinely see via low power digital microscopy from skin or fluids of all patients fit most closely with descriptions and photographs of Actinomyces israelii. There may be other Actinomycosis species, and work is under way at two universities (one a national-level mycology laboratory) to clarify this finding by genetic sequencing. The ubiquity of the organism in healthy people (but localized to the alimentary tract) combined with the greater ubiquity of body regions of Morgellons patients strongly suggests…again…immune deficiency state in these individuals. This would make the fibers markers and not infectious pathogens to be feared.
The typical skin lesions vary but fall into at least two distinct types. One consists of near-circular (about one cm) bluish colored scars that persist for decades but begin as one mm raised lesions followed by weeping ulcers. The second are eczematous-like. All occur most frequently on distal limbs or the back or face. The Filaria species commonly identified clearly create the second type lesion. The first, when lesions are in clusters, may be Actinomycosis or when not clustered, Filaria. Actinomycosis lesions may itch, but Filaria dermatoses itch with incredible ferocity.
Could this be bio-terror?
Nothing that we know from credible sources suggests this. Review of epidemiology texts suggests the phenomenon now labeled Morgellons appears to have existed as an illness decades to centuries earlier. The recency of capable biotechnology makes the genesis of this illness highly implausible.
Is there a cure?
Most Morgellons patients, if found positive for Chlamydophila pneumonia (Chp) and given appropriate antibiotics long enough, resolve most symptoms, presumable by restoring immune competence. Much faster resolution of skin lesions and brain control problems has occurred recently with use of appropriate anti-helmenthic (anti-parasite) drugs and higher penicillin levels against Actinomyces. Most promising, IF Chp is the initiating agent, the vaccine has been created and is in trial at Novartis. Release to patients must await all efficacy and safety testing, but early animal tests indicate this is a 100% blocking AND curing vaccine.
Does anyone care?
See our Medical Page. WE care. And with each successive month, more professionals are becoming aware of this illness and treating it. The US Centers for Disease Control and Prevention (CDC) has now undertaken the task of helping to further characterize at least Morgellons if not the actual illness. Eventually, the truth, whatever it may be, will prevail, and with ultimate answers will come recovery.
What is the treatment?
The role of the Foundation is to search for and verify effective treatments, THEN communicate this information to the medical community. The problem with ineffective treatment to date comes from incorrect information woven into the current medical paradigm. As more data is gathered about treatments already in use, this will be submitted for review by peer-reviewed medical journals. At this point, if credible and fully accepted, treatments will be available for all humans safely. Getting to this point is now the enormous task of the MRF and will require relatively large funds as rapidly as possible. By law, WE cannot prescribe medicines, but we can make their availability a reality.
Who suffers from Morgellons disease?
There are more than 10,000 families who report that they suffer from Morgellons disease, but the actual number may be much higher. There appear to be even greater numbers of similarly ill people that might be called Morgellons variants. All comprise numerous family members, including many children. According to reports from parents, affected children are no longer able to play sports or attend school, and experience extraordinary fatigue, pain and difficulty with mental concentration. Adults are equally affected and many eventually become unable to work.
How is the CDC responding to this crisis?
According to the CDC, they have received an “increased number of inquiries from the public, health care providers, public health officials and the media” regarding Morgellons disease, and they are in the process of planning an investigation. (In fact, the CDC received more inquiries regarding Morgellons disease than any disease in the agency’s history.) The CDC recently posted information about the disease on their website. (See our CDC page for more information) Because of the nature of governmental agency function, including the difficulty obtaining congressional funds, private research may be the most effective way to augment this investigation and bring us quickly to a cure.
How are physicians responding to this crisis?
Some physicians are attempting to treat patients with this illness, although they do not understand its cause. The disease we are addressing exists incorrectly labeled in medical texts as Delusions of Parasitosis. Because of this, cookbook clinicians will necessarily assume you are psychotic or delusional and look no further. In truth, prescription of psychopharmacological agents will help many patients with emotional discomfort…a real part of the illness. However, these drugs DO NOT address the actual parasite infestation readily treated with anti-helmenthics. Psychiatric drugs, again, do not address other components of the disease, but all may eventually respond to drugs that target the Chlamydophila species. THE LATTER REMAINS TO BE PROVEN.
How can I help?
We are now at the threshold of real understanding and effective treatment of what we have called Morgellons disease. The Morgellons label appropriately displaced the DOP label in a few such patients, allowing us to understand the extensive nature of the real illness. In order to complete the task of re-characterizing and curing this illness, the roadmap is now in place. Its completion will now require specialist scientists of the highest caliber, each with a now-identified role to play. We can direct this process, but need funding to do so. As adequate funding becomes available, we are required by law to regularly post the progress and findings on the Foundation website so as each of us contributes, we can see the result.
Research is desperately needed to understand the cause of the disease and to find a cure. The MRF has been approached by several institutions that are interested in conducting research. Although the MRF has given seed money to three institutions, at this time, the MRF lacks sufficient funds to fully support these researchers.
CASE DEFINITION, MORGELLONS DISEASE
PRIMARY MORGELLONS SYMPTOMS AND SIGNS The Medical Advisory Board of the Morgellons Research Foundation (MRF) has developed the following Case Definition of Morgellons disease. The Morgellons term was created from necessity by a member of this Board in 2001 to label illness characteristics of a family member that fell outside characteristics of any other described illness. This Board has undertaken the task of defining the illnesses as accurately as possible given that it has not been defined, and is assumed to be present in a yet-to-be-determined, but large number of people. We presume the definition will evolve, updated as newer credible information becomes available.
The Following signs or symptoms are considered the basis of Morgellons Disease based on a just-completed collation of 11,400 patient parameters of a clinical relational database. The details of that study will be delayed pending acceptance for publication but will be generalized here for timely dissemination. The first four characteristics below parallel Delusions of Parasitosis (DOP) that we believe is the initial label given the illness we have re-labeled Morgellons disease. The other characteristics indeed apply to all formally diagnosed DOP patients we have seen but were never incorporated into its description. The only conclusion we can draw is that the DOP concept has remained frozen by its label: once branded psychiatric, all physical pathophysiological mechanisms were assumed imaginary.
1. 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 excoriations. Lesions often progress to open wounds that heal slowly and incompletely with discoloration or seal over with a thick gelatinous outer layer. Evidence of lesions persists visually for years if not for life.
2. Movement sensations, both beneath and on the skin surface. Sensations are often described by the patient as intermittent moving, stinging or biting that occurs most commonly at night. Involved areas can include any skin region (such as over limbs or trunk), but may be limited to regions such as the scalp or face. This phenomenon is distinctly similar to the mass movement of microfilaria produced by intravascular adult Filaria typically between 1 and 4 AM.
3. “Filaments” are reported in and on skin lesions and at times extruding from intact-appearing skin. White, blue, red, and black are commonly described colors. Size is near microscopic, and good clinical visualization requires 10-30 X. Patients frequently describe fluorescence. They also report black or white granules, similar in size and shape to rice grains, on or in the skin or skin lesions. Hundreds of filament and lesion micrographs strongly support the branched filaments and “rice grains” as common characteristics of disseminated Actinomycosis israelii and pyogenes.
4. Emotional effects are present in most patients. Its character typically includes loss or limitation of boundary awareness (empathy loss; as in bipolar illness), persistent obsessional state, and intermittent delusional state. Its Degree varies from virtually absent to extreme. IF (1) the emotional and infectious components of this illness are evaluated separately, (2) the cause-effect relationship is not presumed (as in DOP) without proof, and (3) the consistent SPECT evidence of “randomly” diminished regional blood flow is considered, microfilarial congestion of microcapillary blood flow into or near the limbic system may be the most credible singular link between dermopathy and psychopathology in these patients.
5. Musculoskeletal effect is 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 extremely common, the latter usually with premature signs of degeneration (e.g., age 20) of both discs and vertebrae. All are characteristics of disseminated Actinomyces species.
6. 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 (Fukuda, Ann. Int. Med., 1994) suggesting these poorly defined illnesses first appearing in the 1980s may be the same or related.
7. Cognitive dysfunction, includes frontal lobe processing abnormality interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries. Notably, seriously cognitively impaired patients show diminished frontal blood flow by SPECT.
OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS
1. Shifting visual acuity. Intermittent change in presumed focal length of both eyes concurrently. Consistent with slight (non-glaucomatous) intra-ocular pressure shifting. Never studied.
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 (feet and fingers), abnormal reflexes, neuropathic pain, and recurrent brain control abnormalities affecting motor function, circadian rate, body temperature and respiratory rate and depth.
3. Gastrointestinal symptoms, often including dyspepsia, gastroesophageal reflux, swallowing difficulty, and changes in bowel habits (Similar to IBS or Crohn’s disease and common in more than one filarial species.)
4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyperpigmentation pattern. Hyper-growth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation and Morphea). A common characteristic of infection with Onchocerca cervicalis (A filarial species).
5. Arthralgias. Frequently reported, WITHOUT ARTHRITIS. Common joints are fingers, shoulders, knees and lower vertebrae. Common in chronic Dracunculus insignis infection. (A filarial species)
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, high C1Q, low IgG subclasses 1 and 3, 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.