Annual Update of Morgellons Disease - 2010
by Cindy Casey, R.N. and Gwen Simmons, RN
Physicians, scientists, activists and patients from across the U.S. and as far away as Mexico and Germany gathered in Austin, Texas on March 27, 2010 for the 3rd Annual Scientific- Medical Conference on Morgellons Disease. The all-day event was sponsored by the Charles E. Holman Foundation (CEHF) also known as the New Morgellons Order. CHEF/NMO is an all-volunteer, non-profit, activist organization created to empower patients through medical education and scientific research of Morgellons Disease. The CEHF emphasizes that progress stems from communication and collaboration. Bringing scientific and medical experts, nurses, patients and supporters together to collaborate on the serious matter of Morgellons Disease has helped to accomplish just that. This event, the only one of its kind in the nation, is held annually at the WestOak Woods Baptist Church in Austin. Elizabeth Anderson, RN, MSN, NP, of the CEHF Medical Advisory Panel coordinated the day's events. Guest speakers traveled from both U.S. coasts and in between, contributing scientific and clinical expertise on the subject of Morgellons.
What is Morgellons Disease?
Morgellons Disease is a systemic condition characterized by novel skin manifestations and insidious neurological symptoms. The distinguishing characteristic of Morgellons is the presence of microscopic subcutaneous fibers. Lighted microscopy enables the visualization of these unusual fibers, often colored red, blue, white or clear, embedded in open skin lesions as well as their presence beneath completely intact skin. The exact composition of these fibers remains a mystery.
What about the CDC Investigation?
January 16, 2008, the CDC partnering with Kaiser Permanente announced an initial study would be done in California. As of this writing, no information or results have been released. An invitation from the CEHF to the CDC requesting a representative to speak at the conference was declined as the CDC was unable to provide an appropriate speaker for the subject of Morgellons. With warm wishes for a successful event, the CDC suggested contacting the Texas State Department of Health (DOH) as a resource for an appropriate speaker on the subject. Yet, the TX State DOH is still waiting to hear from the CDC with at least an interim report on their investigation.
Where is the Research?
The Center for Investigation of Morgellons was established in 2006 at Oklahoma State University Center for Health Sciences, under the direction of Dr. Randy S. Wymore, PhD. A secure patient registration form is provided on the OSU website and approximately, 20,000 registrations have been received. Realistically, considering the limitations of an on-line self-reporting process, this number may be representative of only a fraction of the actual number of Morgellons cases. OSU-CHS-CIMD is the only academic institution that has stepped up to the plate in full support of Morgellons Disease research. Progress is restricted only by funding issues. Currently, Morgellons research funding is limited to the contributions from patients with Morgellons, their supporters, and fundraising organizations such as the Charles E. Holman Foundation and the Morgellons Research Foundation.
More about the conference presentations…
Randy S. Wymore, Ph.D., Director of Morgellons Research from Tulsa, OK gave both the opening and closing presentations. "Morgellons has a real physical pathology ... despite of the fact that the exact cause is not known." These were powerful words coming in the morning session from keynote speaker, Dr. Randy Wymore, Director of Morgellons Research. Identifying the certainty of Morgellons Disease as a distinct pathology, Dr. Wymore, a Molecular Physiologist & Biophysicist, presented a broad range of research data including mass spectroscopy, DNA analysis, as well as multiple bacterial and fungal culture results on Morgellons samples. Future research goals concluded Dr. Wymore's afternoon session.
Ginger Savely, DNP, one of the top experts in the U.S. on diagnosis and treatment of Morgellons and tick-borne illnesses presented "Differential Diagnosis" as related to Morgellons Disease. According to Dr. Savely …"Patients are summarily discounted without clinicians' knowledge of the disease's features that differentiate it from other possible diagnoses, including psychiatric." Identification of the unique objective findings in Morgellons Disease was discussed by Dr. Savely. Later in the day, a demonstration of the visualization technique to observe fibers within patients' skin was provided by Cindy Casey, RN, Director of the
CEHF.
Raphael Stricker, MD, world renowned Lyme disease specialist of San Francisco, CA. presented "Morgellons as Related to Lyme Disease". Dr. Stricker discussed the many overlapping symptoms and laboratory findings between Morgellons, Lyme and other tick-borne illnesses. According to recent research, about 97% of Morgellons patients tested positive for Lyme or other tickborne diseases.
Continued research is necessary to pursue the apparent association between these diseases. Dr. Stricker commented that the Morgellons crisis we are experiencing today is reminiscent of what he experienced in the early 1980's as the AIDS epidemic began to surface in San Francisco.
Amelia Withington, MD, a psychiatrist in Pennsylvania, presented case studies from her practice. Dr. Withington has come to understand the issues from both sides, as a physician and as a patient. Her insightful observations and experiences were shared beginning with her own diagnosis in 2008. Her kindred connection between Morgellons and Lyme was more apparent when Amy dedicated her presentation to Leslie Wermers from the film, Under Our Skin. Having become close friends, Amy was deeply affected with the passing of Leslie after the release of the film. Dr. Withington stated, "…She radiated energy and positivity... Her death could hardly illustrate more vividly what a treacherous foe we face in these illnesses. ...she was an inspiration...to spread the word about what is really happening with Lyme and related infections."
Greg Smith, M.D., F.A.A.P., Associate Director and Co-founder of the Charles E. Holman Foundation, a practicing pediatrician in Georgia for 28 years until disabled by Morgellons Disease and Chronic Lyme. As a physician and a patient, Dr. Smith has felt first-hand the nightmare of seeking and obtaining medical care, encountering many of the same barriers which the average Morgellons patients have faced. In his talk, "Morgellons Land Mines and How to Avoid Them", Dr. Smith shared potential avenues for Morgellons patients and their supporters to prevent these situations from developing while making the best of this Morgellons Disease conundrum in which medical literature, for the most part, remains far behind the science of a newly-described condition. Due to dire health circumstances, Dr. Smith was unable to join the 2009 Morgellons Conference. His refreshing comeback to present at this year's conference was as warmly welcomed as his wisdom, wit, and compassionate southern charm.
Neelam Uppal, MD, maintains a private infectious disease practice in Florida. Dr. Uppal's presentation of several case studies offered another glimpse into the difficulties experienced when attempting to medically manage Morgellons Disease. As a physician who understands the reality of the condition, she has blended her knowledge of eastern and western medicine to provide care as well as a fresh insight into researching the underlying complex cause/causes of Morgellons. Dr. Uppal has an on-going effort to fund her progressive research.
The CEHF has and always will incorporate live music as a tradition at the annual Morgellons Conference as an honorary tribute to CEHF founder Charles E. Holman. Charles' love for music lives on through his legacy and songs dedicated to Morgellons, written and performed by Charles Holman himself, are located on the website. "Music has and always will be a huge part of our organization," states Cindy Casey, RN, Director of the CEHF.
Accomplished musician and Morgellons journalist, Cliff Mickelson, performed an outstanding musical session just before lunch. Cliff's performance was followed by Ginger Savely, DNP, singing "True Colors" as a tribute to Morgellons patients. Dr. Savely's performance received a standing ovation. Extremely talented as a pianist and vocalist, Dr. Savely revealed her lifelong passion for music as well as medicine with this performance.
Due to popular request, the question/answer panel time was doubled this year. Audience participants completed cards with questions or areas they wished to have discussed in more detail. Speakers from both morning and afternoon sessions eagerly participated. This portion of the conference, seemingly, could have lasted for hours, as with Morgellons there are still more questions than answers with this complex and mysterious condition.
The conference was concluded with the presentation of a check to OSU Morgellons Research from the Charles E. Holman Foundation in the amount of $10,000. Since the 2009 Morgellons Conference, the total of funds donated by the CEHF is $21,000. Future fundraising plans are underway. The CEHF proudly continues to raise the bar on goals for funding of OSU and Dr. Wymore's continued research efforts of Morgellons Disease.
The 2010 Morgellons Conference exceeded all expectations as an enlightening and informative medical conference. This much-anticipated Annual Spring Outreach Project from the CEHF brings renewed inspiration to medical professionals, patients, and advocates alike. "This event provides a unique opportunity for all those connected to Morgellons…" stated Cindy Casey, RN and Director of the CEHF. At a buffet-style reception held at Tres Amigos Mexican Restaurant after the conference, everyone mingled, shared stories, elaborated on the latest medical information/research, and refilled their spirits. This bonding of the "Morgellons Community" is empowering and keeps hearts and spirits moving in a positive direction as momentum is gained in the war against Morgellons Disease.
For those who were unable to attend and would like to hear more about the information presented, a set of 2 DVDs is available from the Charles E. Holman Foundation for a suggested contribution of $35. Any proceeds from this event will be directed to further Morgellons Research at OSU. Further information is available on the CEHF website:
www.thenmo.org.
