Morgellons Research Foundation

The Morgellons Research Foundation, according to the (MRF) website, 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 2004 by Mary Leitao.

The Foundation considers Morgellons to be a newly emerging infectious disease, but the medical community disagrees, noting that the described symptoms of Morgellons are associated with a psychotic disorder known as delusional parasitosis or "Ekbom's syndrome".

Founding and history

According to the Morgellons Research Foundation's website, Mary Leitao is the MRF's executive director. She states that 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 techniques such as electron microscopy and immunohistochemistry, before becoming a stay-at-home mother.cite news
url=http://www.post-gazette.com/pg/06204/707970-85.stm
title=Mom fights for answers on what's wrong with her son
first=Chico | last=Harlan
publisher=Pittsburgh Post-Gazette
date=2006-07-23 | accessdate=2008-05-29] [http://www.ilads.org/morgellons.html 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)]

In 2001 or 2003, according to Leitao, her then 2-year-old son complained of "bugs." Leitao says she found strange fibers emerging from his skin. Doctors who examined the child reportedly found nothing unusual. One expert at Johns Hopkins who saw Leitao's child and reviewed his records, like other doctors finding nothing abnormal in the child, suggested that Leitao herself could be suffering from "Munchausen's by proxy, a psychiatric syndrome in which a parent pretends a child is sick or makes him sick to get attention from the medical system."cite web
url=http://psychologytoday.com/articles/index.php?term=pto-20070227-000003&page=1
title=The Morgellons Mystery
first=Elizabeth | last=DeVita-Raeburn
publisher=Psychology Today
date=March/April 2007 | accessdate=2007-08-04]

To counter what she perceived as a refusal on the part of doctors to believe her claims, Leitao founded the Morgellons Research Foundation (MRF) in 2002 (informally) and as an official non-profit in 2004. [cite news
url=http://www.dallasobserver.com/2006-07-20/news/the-plague/full
title=The Plague. Bizarre fibers. Black sweat. Bugs under the skin. Welcome to the controversial world of Morgellons disease.
first=Jesse | last=Hyde
publisher=Dallas Observer
date=2006-07-20 ] Operating out of Leitao's home, the MRF has spread its message largely through the internet.

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. [http://thenmo.org/ New Morgellons Order] website]

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. [http://www.post-gazette.com/pg/06226/713319-85.stm Inside fighting endangers nonprofit group] Chico Harlan, Pittsburg Post-Gazette, August 14, 2006.] His Morgellons research program continues as Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease, [http://www.morgellons.org/osu.pdf 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] with collaborators Rhonda Casey and Stephen Eddy, [http://blogs.do-online.org/dailyreport.php?itemid=560&catid=8 DOs in the News for Research] ] and he maintains a working relationship with the foundation.Fact|date=June 2008

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. [http://www.morgellons.org/ 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] [http://www.nature.com/nm/journal/v12/n9/full/nm0906-982a.html Mysterious 'Morgellons disease' prompts US investigation] , Emma Marris, Nature Medicine, 30 August 2006] The proposed diagnostic criteria for Morgellons [http://morgellons.org/case.htm Morgellons Case Definition] MRF Cas Definition, 2007] are broad and encompass symptoms that can appear in association with a number of conditions including menopause and delusional parasitosis.Hinkle, NC. Delusory Parasitosis. "American Entomologist" 2000. 46:17–25. [http://www.mental.health.wa.gov.au/one/resource/41/delusory%20parasitosis%20Dr%20N%20Hinkle.pdf Full text link] ]

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. [http://www.morgellons.org/ Morgellons Research Foundation web site] ] 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.Fact|date=June 2008

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. [http://morgellons.com/media.htm Morgellons research Foundation, Media page] ] 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.Fact|date=June 2008 On January 16, 2008, ABC "Nightline" did a segment on it.

References

External links

* [http://www.morgellons.org/ Morgellons Research Foundation web site]