Episode 132: Advocating for Fibromyalgia Research Funding with Melissa Talwar

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. Advocacy is so important, and in order to advocate for yourself well, you have to be educated about your illness and know yourself well. The better educated you are, the better you can advocate for your needs. This is a significant reason why Tami has created so many episodes of the podcast on Fibromyalgia research and also why she’s 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.

About Melissa Talwar

Melissa Talwar is the Executive Director of the Support Fibromyalgia Network, a national nonprofit dedicated to empowering individuals with fibromyalgia.

In addition to being a graduate of the International Fibromyalgia Coaching Institute, Melissa is a board-certified functional medicine health coach with additional certifications from Dr. Walhs, Dr. Bread-uh-sen, Dr. Kharrazian, functional nutrition, a Master’s in Clinical Neuroscience, and she currently leads coaching for a statewide group medical visits functional medicine campaign. Melissa is an award-winning health coach and a fervent patient advocate.

A steadfast commitment to patient and medical education, collaborative care, research advancement, and advocacy training marks her leadership at the Support Fibromyalgia Network.

Under her guidance, the Support Fibromyalgia Network has become a pivotal source of empowerment, mentorship, and transformative change within the fibromyalgia community.

Website: SupportFibromyalgia.org
YouTube @SupportFibromyalgia
Facebook @SupportFibromyalgia
Instagram @SupportFibromyalgia

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Listener Shoutout

“I wanted to say thank you for what you are doing. I found your podcast while at work, during a flare this last week. I needed something to help guide me. I was skeptical at first, because I have very little knowledge about fibromyalgia, but I have learned a lot and I’m looking forward to learning more!

It has been difficult learning to love and accept this new version of myself, but I am confident that I will get there!

Thank you again!”

~ Regina

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