Morgellons Research Foundation
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The Morgellons Research Foundation, according to the (MRF) website,[1] is a 501(c)(3) non-profit organization dedicated to promoting awareness and research of a described condition the Foundation refers to as Morgellons disease. The Foundation was established in 2002 by Mary Leitao.
The Foundation considers Morgellons to be a newly emerging infectious disease, but this notion has not been accepted by the larger medical community.
Challenges
The MRF considers its greatest challenge to be that most medical professionals do not accept the existence of Morgellons, considering instead that purported sufferers, all of whom are necessarily self-diagnosed, exhibit a range of symptoms from other known conditions.[1][2][3][4] The proposed diagnostic criteria for Morgellons[5] are broad and encompass symptoms that can appear in association with a number of conditions including menopause and delusional parasitosis.[6]
Mary Leitao is the Morgellons Research Foundation's executive director.[7] She graduated magna cum laude from the University of Massachusetts with a Bachelor of Science degree in biology. She worked for several years as a lab technician, performing electron microscopy and immunohistochemistry, before becoming a stay-at-home mother.[8][9]
The MRF asserts that what they call Morgellons disease can be disfiguring and disabling, affects all age groups, and often multiple members of the same family. They believe that the condition may be spreading at an alarming rate, and that the more than 10,000 families registered with the MRF represent only a fraction of the number of people afflicted by Morgellons. The MRF acknowledges the diagnosis of Morgellons disease is not yet recognized by the medical community, and argues that patients' symptoms are, wrongly in their view, dismissed as psychological by health care practitioners.[7] The Centers for Disease Control is currently running a study to establish whether Morgellons exists as a distinct condition, or whether, as conventional medical opinion has it, that the self-diagnosed condition is a manifestation of other known conditions such as delusional parasitosis.[citation needed]
Press coverage
In May 2006, the MRF was featured in a number of local TV news segments coordinated by the MRF's director of communications, who began volunteering at the foundation when he became aware of the suffering caused by the disease.[10] This was followed in June and July by segments on CNN, ABC's Good Morning America, and NBC's The Today Show. In August 2006 a large segment of the ABC show Medical Mysteries was devoted to the subject of Morgellons. This resulted in a significant rise in the public awareness of the term Morgellons during 2006.[citation needed] On January 16, 2008, ABC Nightline did a segment on it.
Internal conflicts result in split
In August 2006 three MRF board members: chairman Charles Holman, medical director Greg Smith, and treasurer Judy Smith, resigned over the right to review the 2004 financial records and disagreement with Leitao on internal politics; each side has a different explanation. (2004 was the first year in which the MRF began collecting contributions. Total contributions for the entire year were $318.00; $100.00 of which Mary Leitao donated herself.) The resigning MRF directors, along with MRF nurse coordinator Cindy Casey and several members of the MRF nursing advisory panel, formed another Morgellons advocacy organization: the New Morgellons Order.[11]
Dr. Randy Wymore, an Oklahoma State University assistant professor of Pharmacology, decided to distance himself from the controversy and surrendered his position of director of research at the foundation.[12] His Morgellons research program continues as Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease,[13] with collaborators Rhonda Casey and Stephen Eddy,[14] and he maintains a working relationship with the foundation.
References
- ^ a b Morgellons Research Foundation web site
- ^ Ash. L.R., Orihel, T.C. 2007. Atlas of Human Parasitology, 5th Edition. American Society for Clinical Pathology Press, Chicago, Illinois, pp. 386–387 ISBN 0891891676
- ^ Koblenzer, CS. The challenge of Morgellons disease. J Am Acad Dermatol. 2006. 55:920–922. PMID 17052516
- ^ Mysterious 'Morgellons disease' prompts US investigation, Emma Marris, Nature Medicine, 30 August 2006
- ^ Morgellons Case Definition MRF Cas Definition, 2007
- ^ Hinkle, NC. Delusory Parasitosis. American Entomologist 2000. 46:17–25. Full text link
- ^ a b Morgellons Research Foundation web site
- ^ Harlan, Chico (2006-07-23). "Mom fights for answers on what's wrong with her son". Pittsburgh Post-Gazette. Retrieved 2008-05-29.
- ^ Delusions of Parasitosis versus Morgellons Disease: Are They One and the Same? Ginger Savely, RN, FNP-C and Mary Leitao, Director of the Morgellons Foundation, ADVANCE for Nurse Practitioners,Vol. 13, Issue 5, Page 16 (5/1/2005)
- ^ Morgellons research Foundation, Media page
- ^ New Morgellons Order website
- ^ Inside fighting endangers nonprofit group Chico Harlan, Pittsburg Post-Gazette, August 14, 2006.
- ^ OSU Findings: June 19, 2007, A position statement from Randy S. Wymore on the topic of Morgellons Disease and other Morgellons-related issues MRF website
- ^ DOs in the News for Research