Advocating for Fibromyalgia Research Funding with Melissa Talwar

Fibromyalgia Podcast®

You're probably aware of the need for more research funding to help us develop new treatments for fibromyalgia. You’re probably also aware of the lack of training most doctors have when it comes to fibromyalgia. But did you realize that the two are connected? Research not only uncovers new potential treatments but also shapes how and what medical schools teach our providers.

Right now, the exact causes of fibromyalgia are unknown. We’ve uncovered many aspects of how it presents, but not enough for it to be definitively classified by medical institutions. That means we don't even know what specialists to see when we need a diagnosis.

How will this change? More research and advocacy for funding. This is a significant reason why Tami is so passionate about sharing her experience and the experiences of other people who have fibromyalgia.

Today, Tami is joined by Melissa Talwar, Executive Director of the Support Fibromyalgia Network, a national nonprofit dedicated to empowering individuals with fibromyalgia. In this conversation they discuss why the Support Fibromyalgia Network was formed and how it’s evolved since its founding, what federal advocacy looks like, tackling the lack of funding for fibromyalgia research, the need for systemic changes and research to be able to change the way medical providers are trained, the power of collaborative efforts and patient involvement in driving these systemic changes, the impact of research funding on developing effective treatments and classification for fibromyalgia, current challenges in classifying fibromyalgia, how you can get involved in fundraising and advocacy efforts for fibromyalgia funding and research, the process of going to Capitol Hill to meet with our representatives, how the Support Fibromyalgia Network supports and trains people who want to get started with advocacy, the need for preparedness in sharing our personal stories and experiences, the significance of obtaining governor proclamations and its impact on creating awareness and recognition, the power of a unified voice and collective advocacy, Melissa’s message for anyone who feels like there’s no progress despite the advocacy, being open to experimenting and layering different modalities and tools, exploring a holistic approach to improving your quality of life, upcoming initiatives for the Support Fibromyalgia Network, how a Certified Fibromyalgia Coach® can advocate for you and help you to advocate for yourself, resources you can access to learn more about fibromyalgia research and advocacy, and more.

Note: This episode is not meant to be medical advice. Every person and every situation is unique. The information you learn in this episode should be shared and discussed with your own healthcare providers.

To learn more about the resources mentioned in this episode, visit the show notes.

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