In this episode, we dive into Long COVID,a condition that continues to baffle experts and impact millions globally. We've brought together some special guests to help us understand more about it. Dr. Cheryl Clark will explain the science behind why Long COVID happens and why it's different for everyone. Netia McCray, who is dealing with Long COVID herself, will share what it’s like to live with these ongoing symptoms. Jacqui Lindsay will talk about how people are coming together in communities to help each other out.

Joining us to unpack the complexities of Long COVID are three distinguished guests. Dr. Cheryl Clark, a leading epidemiologist, offers a deep dive into the latest research and medical understanding of Long COVID, explaining why it affects individuals so differently. Netia McCray, a Long COVID survivor, shares her personal journey through the maze of ongoing health issues, highlighting the emotional and physical toll it takes. Jacqui Lindsay, a community organizer, discusses the grassroots movements that have sprung up to support those affected, showcasing the power of community in facing health crises.

Organizations mentioned in episode:

Boston RECOVER

Community Engagement — Boston RECOVER

Home | National Academies

Research Projects Directory – All of Us Research Hub (researchallofus.org)

Resources:

Long COVID or Post-COVID Conditions | CDC

Engaging diverse communities in health research begins with building meaningful partnerships. In the latest "Conversations with All of Us" episode, Dr. Karriem Watson, Chief Engagement Officer for the All of Us Research Program, and Destiny Harden, Clinical Research Coordinator and Pre-Doctoral Fellow at Massachusetts General Hospital, discuss the importance of meaningful community engagement, where communities are empowered to share their voice.

Cheryl McCloud speaks to members of the community, All of Us participants, and medical researchers, about how they feel about participating in health research. Their stories paint a picture that can help us understand how to keep our communities healthy.

How to get involved in health research:

• https://www.bmc.org/research-operations/participate-research
• https://www.massgeneralbrigham.org/en/research-and-innovation/participate-in-research
• https://www.bmc.org/research/participate-research-or-clinical-trials
• https://www.massgeneral.org/research/clinical-trials
• clincialtrials.gov
• JoinAllofUs.org/PodcastNE

Sources:

1. https://www.framinghamheartstudy.org/files/2023/09/75th-Anniversary-of-FHS-BU-Article.pdf
2. What clinical trial statistics tell us about the state of research today (antidote.me)
3. Newly Identified Genetic Variant Protects Against Alzheimer’s | Harvard Medical School
4. The Gene That Explains Statins’ Most Puzzling Side Effect - The Atlantic
5. People fearful of taking part in vital clinical research | ScienceDaily

In the latest “Conversations with All of Us” podcast episode, Cheryl McCloud speaks with Daniel Moretti, Community Engagement Lead with PRIDEnet, and Edie Stringfellow, Vice President of Ecosystem Development for the Center of Global Health Innovation and All of Us New England Community Advisory Panel member, about the importance of diversity in health research.

About the guests:

Daniel Moretti (all pronouns) is Community Engagement Lead with PRIDEnet, based out of Stanford University. His work focuses on connecting LGBTQIA+ community members with ways to participate in research, such as The PRIDE Study and the All of Us Research Program, and creating opportunities for community input to inform all stages of the research process. Daniel has more than fifteen years of experience working at the cross sections of community engagement, social justice, research, and non-profit arts in diverse locations including San Jose, San Francisco, Los Angeles, Boston, London (UK), and Cebu (Philippines).

Edie Stringfellow (she/her) is the Vice President of Ecosystem Development for the Center for Global Health Innovation. Ms. Stringfellow recruits national and international pioneering organizations to expand Atlanta, GA’s collaborative biohealth ecosystem, a growing and thriving marketplace where the life sciences community works together to balance global and local priorities. She is also a Community Advisory Panel member for All of Us New England.

Research studies mentioned in the episode:

https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study

More than Tuskegee: Understanding Mistrust about Research Participation - PMC (nih.gov)

All of Us Research Hub (researchallofus.org)

Host Cheryl McCloud is joined by Dr. Jordan Smoller, psychiatrist at Massachusetts General Hospital and Professor of Psychiatry at Harvard Medical School, and Dr. Jessica Isom, community psychiatrist at Codman Square Health Center, for a discussion on mental health, the barriers to accessing mental health care, and the future of mental health research.

To learn about the benefits of participating and how you can join, visit mgb.JoinAllofUs.org.

Resources mentioned in the episode:

NAMI.org

American Psychological Association

American Psychiatric Association

All of Us New England Mental Health Resource Guide

National Institute of Mental Health

Anxiety and Depression Association of America

988lifeline.org

Crisis Text Line

Acrynoyms:

SAMHSA - Substance Abuse and Mental Health Services Administration

BIPOC – Black, Indigenous, and People of Color

In the latest “Conversations with All of Us” episode, Cheryl McCloud speaks with Dr. Cynthia So-Armah, Internist at Brookside Community Health Center in Jamaica Plain and Co-Investigator for All of Us New England, and Dr. Thea James, Vice President of Missions, Associate Chief Medical Officer at Boston Medical Center, and Associate Professor of Emergency Medicine, about the importance of trust within health research and health care systems.

Dr. Cynthia So-Armah

Dr. Cynthia So-Armah is an internist, practicing primary care at Brookside Community Health Center in Jamaica Plain. She serves as Medical Director for Brookside, Instructor of Medicine at Harvard Medical School, and Regional Medical Director for Brigham and Women's Primary Care. She divides her time between caring for a largely Spanish speaking and immigrant patient population, and working with an incredible team at Brookside and Brigham to manage operations and improve the care that they provide to their patients and community, keeping health equity at the heart of all that they do.

Dr. Thea James

Dr. Thea James is vice president of mission, associate chief medical officer, and co-executive director of the Health Equity Accelerator at BMC. She is also an associate professor of emergency medicine and director of the Violence Intervention Advocacy Program. Dr. James works with BMC caregivers and builds BMC's relationships and strategic alliances with local, state, and national partners, to meet the full spectrum of essentials that enables patients and communities to thrive. The intentionality is to foster a strategic ecosystem of growth, transformation, and effective models of care that are rooted in equity and economic inclusion. Dr. James has held several positions in her 27-year tenure at BMC, and her passion is in public health, both domestically and globally. Dr. James received a Doctor of Medicine from Georgetown University School of Medicine and trained in emergency medicine at Boston City Hospital where she was chief resident.

We all have different life experiences, and live in different places with different people. Our genes are not the only factor that affects our health. Our lifestyles and environment also have an impact.

In our most recent episode, host Cheryl McCloud speaks with Dr. Cheryl Clark, hospitalist in internal medicine at Brigham and Women’s Hospital and Principal Investigator for All of Us New England, and Dr. Elizabeth Sweet, Associate Professor of Anthropology at UMass Boston, about the social, environmental, and cultural factors that affect our health.

Check out the type and amount of data that All of Us collects at databrowser.researchallofus.org.

Visit JoinAllofUs.org/PodcastNE to learn more about the All of Us Research Program.

In episode two, Dr. Dean Xerras, Medical Director of MGH Chelsea Healthcare Center, and Michelle Anderson, retired Massachusetts General Hospital nurse and All of Us New England Community Advisory Panel member, discuss precision medicine and the future of healthcare.

Dr. Xerras is an internist, practicing primary care for over 20 years. He serves as Medical Director of MGH Chelsea Healthcare Center and also an Assistant Professor of Medicine at Harvard Medical School. He divides his time between seeing patients, overseeing operations of a large community health center, and teaching the next generation of primary care physicians.

Ms. Anderson is a ‘nursepreneur’, consultant and educator with over 30 years experience in the healthcare industry. She is a champion for those whom voices are often unheard.