Investigating Morgellons Syndrome
The Morgellons Research Foundation
The Morgellons Research Foundation (MRF) is a “non-profit organization dedicated to raising awareness and research funding for a poorly understood illness, which we refer to as ‘Morgellons disease.’”
The MRF was set up as a website by Mary Leitao in 2002, initially in the hope that it would put her in touch with medical practitioners who were familiar with the disease her young son was suffering from, but in fact attracted hundreds of people suffering similar symptoms and quickly grew into a foundation that promotes research, registers suffering families and applied political pressure to get Morgellons recognised in the wider world.
Currently the site claims that there are over 11500 registered families from all over the world - all fifty states in the United States as well as Canada, New Zealand, South Africa, Japan, the Philippines, Indonesia, Australia, Ireland, Holland, Denmark, Italy, Spain, England, Germany and France. The foundation is referenced numerous times in the CDC taskforce press conference (see this website 'CDC taskforce') and appears to be the major source of Morgellons information in the world.
The New Morgellons Order
There is a second Morgellons organization, the slightly sinister sounding New Morgellons Order , also known as the Charles E. Holman Foundation. This organization came into being following the resignation from the MRF board of a number of members, including Dr. Holman, as a result of a dispute about the organizations accounting procedures. No charges were brought, the sums of money involved were small and the MRF now posts their finances on their site.
The NMO website, claiming over 12000 registered families, is a curious affair, featuring ‘Morgie of the Month’ in which a sufferer submits their biography and experiences in dealing with Morgellons, a pet section, which offers photographs along with a lighthearted text about a pet animal which is suffering from Morgellons, and a ‘Classic Quote’ page in which medical professionals who have made, what are perceived as, negative comments about the reality of the disease or the state of mind of the sufferers are disparaged through ‘photo-shopping’.
Morgellons Watch
The third notable site inspired by Morgellons is MorgellonsWatch a site that makes no bones about its debunking mission. The site is host to some of the most hysterical and bitter invective as skeptics and believers engage in mudslinging, name-calling, disinformation and occasional debate.
The site features two rabid debunkers who are frequently accused of being government disinformation agents. Interestingly the pair regularly crop up on other message boards discussing Morgellons and Lyme disease and obviously invest a considerable amount of time in their efforts, one can only wonder why. Similarly, quite why ‘true-believers’ waste time and energy posting to the site and engaging in debate with people who think they are delusional is just as big a mystery.
The MorgellonsWatch site can sometimes offer some interesting perspectives in the debate, but suffers from the same intractability of views of any group or individual with a predetermined position.
Other sites
There are of course numerous other sites featuring Morgellons few of which are reputable medical sites. One exception is the renowned Mayo clinic which, against the medical trend, has accepted the possibility of Morgellons disease and offers advice to sufferers.
The lack of easily available, well-informed information on Morgellons is indicative of how the medical community has by-and-large ignored the phenomenon. The movement that has brought Morgellons to wider attention is bottom-up via patients, rather than the top-down movement, via physicians, that is usual with new disease entities. This has resulted in the formation of a significant online community of sufferers centering around the disease and living with it in the face of the medical community’s indifference.