The Morgellons Research Foundation seems to be undergoing a slow meltdown. After the split with the New Morgellons Order last year they have been relatively quiet. Recently though, they stopped asking people to register at the Oklahoma State University, and instead started heavily soliciting donations directly to the MRF.
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 Delusions of Parasitosis given him by medical clinicians. In a search for others like her son, the biologist created a website for intercommunication. By 2002, she had been contacted by patients from all 50 states as well as globally reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF.
That’s very odd. It has never been suggested, by Leitao or anyone else, that her son had been diagnosed with DOP. Nobody is going to diagnose a two-year-old boy with delusions. The rather odd phrasing here suggests this was not written by Mary Leitao.
The page was updated after a few hours to read (as of 9/10/2007, 4:30PST, changes highlighted):
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.
Seems like someone realized their mistake.
The page continues:
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.
Again rather odd. DOP has been recognized as a condition for over a hundred years. There is no doubt that it exists. The above seems to be suggesting that all cases diagnosed as DOP are actually “Morgellons”. this will come as news to Randy Wymore, director of the OSU Center for the Investigation ofMorgellons Disease, who says:
Delusions of parasites (DOP) is a diagnosable condition […] Of the many thousands who have self-reported at the OSU web-based registration site we do not know whether 1% actually suffer from DOP or 90%.
Perhaps this disagreement is responsible for the widening split between the MRF and OSU.
Finally, regarding the CDC investigation, the MRF now says:
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.
This baffles me. They seem to be admitting that the CDC is performing an investigation without any evidence to support that investigation, and that Morgellons is actually a wide variety of illnesses.
So who is writing this? Not Leitao, Savely or Stricker, they are much more reasonable and level headed. Not pez1103, the MRF’s advocacy coordinator, she does not use language like “egregious dinosaurs of medical nosology”
I suspect that this rather chaotic and discordant editing might be William T. Harvey’s work. He’s the chairman of the board of the MRF. I suspect that he’s going to announce that he’s discovered that Morgellons is a multiple set of illnesses and opportunistic parasitic infections caused by an altered immune system compromised by infection by Borrelia burgdorferi (Lyme disease). [EDIT: Wrong, they are claiming it’s worms]