Episode 108 - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome 101, with Emily Taylor from Solve ME

Explicit content warning

11/16/23 • 57 min

Emily explains what post-exertional malaise is, and highlights the challenges associated with diagnosing and managing ME/CFS. Emily emphasizes the need for personalized care and the critical role of patients in advocating for their own health. This conversation underscores the significance of creating strong support networks for people living with ME/CFS, as well as the broader chronic illness community. They also highlight the value of sharing personal stories to raise awareness and bring about policy changes.

Episode at a glance:

Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness.
Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.
Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource.
Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.
Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!

Speaker Bios:

Emily Taylor

Vice President of Advocacy and Engagement at Solve ME, Emily brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years’ experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies.

She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

For full episode details including a detailed transcript and video:

Coming soon on the Arthritis Life Website.

Episode at a glance:

Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness.
Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.
Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource.
Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.
Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.

Medical disclaimer:

Episode Sponsors

Speaker Bios:

Emily Taylor

Cheryl Crow

For full episode details including a detailed transcript and video:

Coming soon on the Arthritis Life Website.

Previous Episode

The Benefits and Challenges of Publicly Sharing Your Chronic Illness Story: Insights from Brianna | Ep 107

Cheryl and Brianna discuss the challenges and the benefits of sharing your chronic illness story publicly on social media, including how they deal with both positive and negative feedback from a growing audience. They also discuss the positive impact of finding support and inspiration online.

Brianna shares her involvement with the Arthritis Foundation and the Lupus Foundation, highlighting the importance of giving back and helping others in the community.

The role of support groups, camps, and patient advocacy organizations in providing a sense of community and connection for individuals living with chronic diseases is highlighted. Cheryl and Brianna also discuss the value of adapting and accepting one's condition to live a fulfilling life. Finally, they emphasize the importance of acceptance and adaptation in thriving with rheumatic diseases.

Medical disclaimer:

Episode Sponsors

For full episode details including a video and transcript

Go to the episode page on the Arthritis Life website for full details!

Next Episode

What is Remission for Rheumatoid Arthritis? With Dr. Isabelle Amigues

Cheryl and Dr. Amigues touch upon the significance of accurately diagnosing RA and the potential for misdiagnosis, especially as this influences the ability to receive appropriate care. They give valuable insight into the journey of living with RA, and bring a positive perspective that thriving can be possible through effective medical interventions and lifestyle modifications.

For full episode details including a transcript and video, go to the episode page on the Arthritis Life Website.

Episode at a glance:

Being a rheumatologist: Dr. Amigues finds joy in her medical practice, especially in encouraging patients to live life to the fullest despite challenges. She emphasizes understanding the patient's perspective and asking thorough questions.
Importance of Accurate Diagnosis: The complexity of rheumatological conditions is acknowledged, with Dr. Amigues mentioning the importance of differentiating between various disorders for accurate diagnosis, while considering factors like comorbidities to create effective treatment plans.
Individualized Patient Care: Dr. Amigues emphasizes the importance for patients to find a rheumatologist they trust, fostering personalized, comprehensive care. Advocating for accurate information and addressing medication concerns are also important while navigating healthcare for rheumatic conditions.
Rheumatoid Arthritis (RA) Remission: Dr. Amigues shares the possibility of medicated remission in rheumatoid arthritis, highlighting advancements in treatment options and balancing these with lifestyle adjustments.
Management through lifestyle adaptations: The integration of lifestyle changes alongside medical treatments for managing RA is discussed, with a focus on using exercise and movement as beneficial strategies.
Mental Health and Self-Worth: The conversation explores psychological aspects of living with chronic diseases, addressing the concept of accepting and coping while acknowledging that life may present ongoing challenges that impact adaptability.
Language Matters: Being mindful of the language used with chronic illness makes a difference. For example, patients don't fail medications, rather, certain medications may not achieve the desired result. Terms like "difficult to treat" should not be applied to the patient but rather to the disease itself. The importance of using sensitive language when discussing rheumatoid arthritis and similar conditions is also expressed.