Interviewed by Shaylynn Hayes-Raymond
Congratulations on your new position! Could you tell our readers about The Misophonia Research Fund and what your organization does? Who founded it?
Thank you, Shaylynn! Serving as the Executive Director of the Misophonia Research Fund (MRF) has been incredibly exciting! I’m still new to the role and have greatly enjoyed speaking with many misophonia researchers as well as individuals impacted by misophonia over the past few months to better understand the space and how the Fund can support their efforts.
The MRF was launched in 2019 as an initiative of the REAM Foundation to support scientific research focused on misophonia. Our goal is to unravel the underlying causes of misophonia, comprehensively map its symptoms and progression, and pioneer more effective treatments for this complex disorder. To this end, the Fund has invested over $10M into misophonia research through its competitive grants program and looks forward to seeing the impact of this research on the misophonia community.
Could you tell us about your position at The Misophonia Research Fund?
As Executive Director of the MRF, I am responsible for growing MRF and guiding the continued creation of a sustainable and impactful program focused on advancing breakthroughs and ending suffering from misophonia. Specifically, I am focused on overseeing the Fund’s research activities, including implementing our multiyear grant program, recruiting appropriate peer reviewers, and working with grantees during the semi-annual reporting process. I also focus on understanding the wants and needs of the misophonia lived experience community and how the Fund can help address those needs through patient-oriented research.
The misophonia community views misophonia as a neurophysiological disorder, especially considering the work of Dr. Kumar (Brain basis), do you agree with this conceptualization of the disorder?
I’m a big fan of Dr. Kumar’s work – he’s one of the few researchers that the MRF has funded twice because of its importance and impact on the community! Dr. Kumar was also one of the authors of the Consensus Definition of misophonia, an effort undertaken by some of the leading researchers in the space and organized by the MRF, with the goal of formally aligning on the inclusion criteria for this disorder. Historically misophonia has been defined using a variety of methods which have led to a number of important practical research complications.
The Consensus Definition that Dr. Kumar and others aligned on, in short, defines misophonia as a disorder of decreased tolerance to specific sounds or stimuli associated with such sounds and expands to touch further upon the field’s definition of triggers as those experienced as unpleasant or distressing and tend to evoke strong negative emotional, physiological, and behavioral responses that are not seen in most other people. The definition also focuses on misophonic responses as those that do not seem to be elicited by the loudness of auditory stimuli, but rather by the specific pattern or meaning to an individual. Importantly, we hope this definition helps serve as the foundation of future diagnostic criteria and validated diagnostic tools, and that it brings cohesion to the diverse and interdisciplinary misophonia research and clinical communities. Further, we expect that as research continues in this field the definition will change and adapt to best fit our current knowledge.
I encourage readers to read the entire Consensus Definition published in Frontiers of Neuroscience.
There is still much to be known about misophonia. The misophonia community often worries about practitioners and researchers applying treatments for other disorders and “seeing what sticks”, how do you feel about this practice?
People living with misophonia deserve the same standard of evidence-based treatment as those living with any other disorder. We fund research investigating treatments for misophonia to help gather this standard of evidence for the community.
Does the community’s opinion on misophonia and the perceived harm come into account when funding studies? For example, we noticed that there is a study on exposure therapy that was funded. While we understand that “proof” is a necessary concept even for things that don’t work—what if this study causes unnecessary harm to participants?
A priority of the Fund is supporting ethical and scientifically rigorous studies. We strongly consider all perceived harm that could befall a study participant, and all funded studies must have Institutional Review Board (IRB) approval, which helps protect the rights and welfare of all participants. Further, we take great care in selecting members of the grant review committee with expertise in the specific subject matter submitted through the letters of intent for grant submission. We believe these two steps together allow us to effectively understand the balance between potential harm and potential benefits from conducting a specific research study. As the Fund grows, we look forward to continued expansion of our partnerships with those directly impacted by misophonia. These partnerships allow us to ensure that we continue to support patient-focused research.
If exposure therapy did work for misophonia—as a follow-up—would we not all be cured? Misophonia triggers are normal stimuli that are impossible to avoid. For example, no matter how much I try to avoid chewing, sneezing, and coughing, I am likely to hear these sounds every day. Will there be research on this lack of habituation?
Similar to many other funding organizations, what projects the MRF supports is a function of (a) what projects are submitted and (b) how our reviewers score submitted projects. If a project topic has not been funded, it results from one or both of these determinants being low. As we receive new applications each year, I cannot speak to what will or will not be funded in the future but look forward to continued funding of high impact research.
Does the Misophonia Research Fund have a plan for dealing with stigmatization of disorders like misophonia? For example, Dr. Phil, Kathie Lee and Hoda, and others have mocked misophonia on live TV.
Stigmatization originates from a lack of understanding. Our hope is that by increasing the general population’s understanding of misophonia through channels such as MRF’s social profiles, increasing MRF’s web presence, and encouraging misophonia researchers to engage in media, we will decrease this stigma.
Has there been trouble finding researchers to fund through your organization? For example, if the misophonia community wants more brain-based research, is there a lack of researchers applying for grants with these skillsets?
We’re lucky to have the opposite problem! We have an abundance of qualified researchers who apply for funding each year. We also welcome new researchers from diverse disciplines, as well as new, innovative research ideas in response to our yearly RFP. Further, we strongly encourage other organizations, funders, and the government to support misophonia research and the incredible work these investigators are conducting. There is still so much to learn, and many investigators who are qualified, eager, and excited to conduct it – we are looking forward to the continued growth of the misophonia research field.
How can neuroscientists and psychiatrist scientists bridge the gap and work together rather than against one another?
We support both psychiatrists and neuroscientists who are investigating misophonia. Each year, we bring all our funded investigators together at our annual MRF Funded Investigators Meeting. This 3-day meeting is comprised of workshops, talks, and time for open conversation where researchers can learn from one another and forge collaborations. I believe that events such as these – that increase communications between neuroscientists, psychiatrists, and others – help bridge the gap between them.
Do you have anything else you would like to add?
I am excited to continue getting to know and work with the misophonia community to find the answers to help end suffering.