Still Here, Still Dedicated: Progress in Morgellons Research
We remain just as dedicated as ever to Morgellons research, recognition, and education. Although the past few years have brought challenges — from the pandemic to health and family losses among our board — our daily work has continued. Patients continue reaching out for guidance, and several important projects have been unfolding behind the scenes.
Our Continued Commitment
Many situations have slowed us down over the past few years, including the pandemic, multiple medical issues and procedures among our board members, loss of several of our family members and more. However, we’ve continued our day to day operations as usual as we continue to hear from increasing numbers of Morgellons patients seeking guidance.
Behind the Scenes Progress
Several projects have been going on behind the scenes and we’d like to update you with the latest happenings.
Spotlight: Melissa Fesler, DNP
Melissa Fesler, DNP has been working hard behind the scenes to make a better world for Morgellons patients. Pursuing her doctorate degree at UCSF gave her an opportunity to make improvements in educating doctors about the diagnosis of Morgellons. With UCSF’s Dermatology department being one of the largest and most vocal deniers of Morgellons, using the term as synonymous with DOP/DI (Delusions of Parasitosis/Delusions of Infestation), it is ironic that the Nursing department is looking into improved Morgellons diagnostics differentiating Morgellons from DOP.
While studying in UCSF’s Doctor of Nursing Practice program, Melissa Fesler developed the first evidence-based preliminary diagnostic protocol for Morgellons disease — a poorly understood dermatologic condition associated with spirochetal infection. Morgellons disease is often misdiagnosed due to a lack of evidence-based diagnostic protocols, clinician knowledge and literature. Fesler designed a project to improve the perceived knowledge and confidence of clinicians in diagnosing Morgellons disease. Health care providers who received education on Fesler’s protocol reported an increase in knowledge of the disease and confidence in diagnosing it. Now, Fesler plans to conduct a systematic review to establish Morgellons disease in the literature, after which she will create guidelines for clinical practice.
Advancing Morgellons Diagnostics at UCSF
A better way to diagnose Morgellons disease With her doctorate already in hand from UCSF’s Post-Master’s Entry to the DNP pathway, nursing alumna Melissa Fesler, DNP, RN, FNP-BC, can speak to the advantages of a doctorate on her career. “UCSF’s DNP program was eye-opening,” Fesler said. “It gave me the confidence of knowing what steps I needed to take to implement policy changes. I learned that to establish credibility, I needed to perform quality improvement research and publish papers.” For her scholarly project, a requirement of the UCSF DNP program, Fesler developed a preliminary protocol for the diagnosis of Morgellons, a tick-borne disease that is caused by untreated Lyme disease. This protocol is now implemented at her clinic, Union Square Medical Associates in San Francisco, and she plans to publish future studies in hopes it will become widely adopted.
Nurse practitioner Melissa Fesler, who received a doctorate from UCSF’s School of Nursing, conducts an exam at Union Square Medical Associates. Photo by Noah Berger.
Recently, she launched subsequent research digging deeper into the potential diagnostic markers of Morgellons, demonstrating it is physical not psychological, a common misdiagnosis.
With an undergraduate degree in medical microbiology, Fesler had a proclivity for infectious diseases and jumped at the opportunity to study Morgellons, a dermatologic condition primarily affecting middle-aged women. Morgellons causes acute chronic skin wounds, many of which contain protruding fibers. Patients claim feeling like something is crawling under their skin and are most often initially referred for psychiatric treatment.
Horrified by the misdiagnosis and the debilitating nature of the condition, Fesler dedicated her scholarly project to developing a protocol for accurately diagnosing the condition. She tested and refined her work with feedback from physicians who reported it improved their knowledge and confidence in diagnosing Morgellons when examining patients with skin conditions.
“What drove me to my DNP at UCSF was that I saw the need to change the way policies and guidelines were being used for this patient population, and I didn’t know how to use evidence-based literature to move forward to implement changes,” Fesler said. “The DNP program taught me the steps to make change happen on a micro and macro level.
Morgellons research has also been ongoing at Mount Alison University in New Brunswick under direction of Julie Lewis and Vett Lloyd, PhD. We’re hopeful for a publication soon.