Lived Experience Insights
A report from the LEARN Duke CMER webinar (with soQuiet and Misophonia Research Network)
For those of you who attended the LEARN Webinar, you may know that LEARN is an acronym for Lived Experience Advocating for Research Needed. If you were unable to attend, you might just be hearing about this effort right now! Duke CMER, along with soQuiet and the Misophonia Research Network alongside members of our misophonia community have prioritized how those of us with lived experience feel about both what is researched in misophonia and what we feel clinicians should do and not do!
TOP RESEARCH PRIORITIES
Treatments/interventions
Developmental/longitudinal studies through the lifespan
Causes and mechanisms
What is happening in the brain
Relation to comorbidities
Managing anticipatory anxiety
Understanding triggers (visual, speech-related, variability, and physical effects)
ADDITIONAL RESEARCH PRIORITIES
Impact on family functioning
Genetics
Spectrum of severity
Effectiveness of coping mechanisms
Cross-cultural considerations
WHAT DOCTORS SHOULD DO
Validate the patient
Work with the family
Research and educate themselves
Target anticipatory anxiety
Include occupational therapists in treatment team
WHAT DOCTORS SHOULD NOT DO
Rely on the patient to educate them
Invalidate the patient
Exposure therapy
WHAT DOCTORS SHOULD KNOW
Shorter studies are more feasible
Limiting inclusion criteria can cause major disappointment
Place and time influence severity of triggers
Everyone with Misophonia has an individual experience
The whole family is affected
Time and money are a major concern
It is exhausting to constantly explain yourself and consider every move throughout the day to avoid triggers
I will let you know when the next event is and I hope that you will be able to join!