Frequently Asked Questions

What is Morgellons disease?
Morgellons disease is a poorly understood condition which a growing number of physicians believe to be a chronic infectious disease. The disease can be both disabling and disfiguring. The symptoms include itching, biting and crawling sensations, “filaments” or fibers which emerge from the skin, skin lesions which range from minor to disfiguring, joint pain, debilitating fatigue, changes in cognition, memory loss, mood disturbance and serious neurological manifestations. Although the Centers for Disease Control and Prevention (CDC) is currently investigating the disease, it is not yet fully recognized by the medical community. At this time, the cause of Morgellons disease is unknown and there is no known cure. Morgellons Disease is best explained in detail by our Case Definition.Back to top

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 seemed a unique label for an illness not described by any other medical label, and thus became a much-needed niche for patients otherwise falling outside the present medical paradigm. The name “Morgellons” was intended to be used as a temporary label.Back to top

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 without health insurance because they can no longer work. Most people who suffer from Morgellons disease report feeling frightened and hopeless.Back to top

What is the source of the skin lesions and fibers?
So far, we have no idea whether Morgellons skin lesions and related material such as colored fibers are (1) biological agents, (2) produced by such agents, (3) are products of the body’s attempt to rid itself of pathogens, or (4) an aberrant body system unrelated to any agent. Serious efforts are finally now underway to characterize the dermal-related material that should solve part of the puzzle.To date, various clinicians have seen,and occasionally identified, certain common dermato-pathogens OR organisms not found on humans but on animals or on inert material. This suggests the possibility that the skin immunity of Morgellons is seriously deficient, allowing numerous animal or plant parasites to live on human skin. Experience and information from registrants leads us to believe the skin phenomena of Morgellons is not specifically dangerous, although possibly frightening and uncomfortable. The same information sources lead us to observe that treatment addressing the more global symptom set also resolves the skin symptoms and signs. The treatment presently most successful is antibiotics addressing one or more candidate infectious bacteria or protozoa.Back to top

Could this be bio-terrorism?
NOTHING that we know from credible sources even suggests this. The cause is likely known bacteria missed by science because of incorrect early assumptions, much like Marshall’s finding Helicobacter pylori, a common “good” stomach parasite turned out to be the primary cause of certain ulcers and gastritis…NOT stress and pizza.Back to top

Is there a cure?
Most Morgellons patients, if found positive for Chlamydophila pneumonia, a Babesia species or a Borrelia species pathogenic to humans and given appropriate antibiotics long enough, resolve most symptoms. Research and clinical experience are still too early, and numbers treated too few as yet, to know whether present treatment success will mean total, once-and-for-all cure. Many Morgellons patients are improving significantly.Back to top

Does anyone care?
WE care! With each successive month, more professionals are becoming aware of Morgellons and treating it. The US Centers for Disease Control and Prevention (CDC) has now undertaken the task of helping to further characterize the illness. Eventually, the truth, whatever it may be, will prevail, and with ultimate answers will come ultimate caring.Back to top

What is the treatment?
The concept we now find most useful has, as mentioned above, lead us to effective treatments. This MRF will continue to move through the necessary steps of fully characterizing the illness, understanding its biological mechanism, determining any involved agents, and identifying them in detail…and finally, refining treatment for rapid and complete recovery. We ARE moving rapidly now. We ARE seeing effective…though not yet always complete…treatment. Funds to bring in additional researchers, collaboration with credible institutions and individuals, and eventually entry of the NIH and full medical community, are the fuel needed to end the existence of this nemesis. If you wish to contribute towards these efforts, you are most welcome. Please visit our Advocacy/Volunteer page.Back to top

Who suffers from Morgellons disease?
There are more than 13,000 families who report that they suffer from this disease, but it is believed that the actual number may be much higher. Many of these reports involve multiple family members, including numerous children suffering the effects of the disease. According to reports from parents, many of these children are no longer able to play sports or attend school, due to fatigue, pain and difficulty with mental concentration. Adults are equally affected by this illness and many eventually become unable to work.Back to top

How is the CDC responding to this crisis?
The CDC is currently conducting an epidemiologic investigation of the disease. CDC has awarded a contract to Kaiser Permanente’s Northern California Division of Research to assist them in this investigation. You can read more about the investigation on the CDC website. Private research is needed to augment this government investigation and help bring us faster scientific answers. For the history of CDC action with regards to Morgellons disease, please see our CDC Timeline.Back to top

How are physicians responding to this crisis?
Some physicians are attempting to treat patients with this illness, though they do not understand its cause. Since the disease cannot be found in medical textbooks, many other physicians dismiss these symptoms as psychosomatic, and may misdiagnose their patient with “delusional parasitosis,” a mental condition where people imagine that they are infested with parasites.Back to top

How can I help?
Please consider making a donation. 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.You can also check out our advocacy pages for ways to get involved and help the cause.Back to top

How can I receive the latest news and
developments in research?
When you register, you will be placed on our Newsletter mailing list. We also are taking note of the states where patients and their family and friends are living. If you would like to see the states where we see the greatest number of reports of Morgellon disease, go to the geographical maps.Back to top