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Lindsey Port, who lives with severe Long COVID, represents District 55 in the Minnesota State Senate. How does she do it and to what extent can state governments impact the lives of people with chronic illness? In our conversation, Senator Port shares why she insists on disability accommodations, why it was important for her to share her Long COVID story, and why she encourages YOU to share yours.

Senator Port believes that while there are valid reasons for concern as the government undergoes a transition, there are concrete reasons to remain hopeful.

Learn more about Senator Port
https://www.instagram.com/lindseyportmn/
https://www.lindseyportmn.com/
https://bsky.app/profile/lindseyportmn.bsky.social

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The United States government is in transition, and the new administration may make dramatic changes that will impact people with Long COVID, among others. In this reading of my November essay for the Long Covid MD Substack, I explain why, because I am concerned, I am not panicking. 

Read, subscribe and share: https://longcovidmd.substack.com/p/why-im-not-panicking?r=478j9x

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In this conversation, Dr. Zeest Khan and certified clinical mental health counselor Paige Zuckerman discuss the critical role of therapy for those dealing with chronic illness and Long COVID. They explore the stigma surrounding mental health, the importance of understanding grief and fear in the context of medical loss, and the potential for post-traumatic growth. The discussion also covers the renegotiation of relationships and boundaries, the significance of finding the right therapist, and the concept of allostatic load in managing chronic illness. Ultimately, they emphasize the value of community and support groups in navigating these challenges.

Paige Zuckerman https://www.psychologytoday.com/us/therapists/paige-zuckerman-salt-lake-city-ut/195354

Audio engineering by True Media Solutions 

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How is the United States using federal funds to find a cure to Long COVID? Today, with the help of prominent guests, I reflect on the recent RECOVER-TLC workshop, which will influence the direction of Long COVID in the United States. The workshop was hosted by the National Institute of Allergy and Infectious Disease, and included presentations by scientists, clinicians, patients and advocates. It's a really big deal, but don't worry if you missed it. I'm here to catch you up on the major highlights and take-aways.

Thank you to:
Jon Douglas https://jondouglas.dev/longhaul
Jermaine Greaves https://www.instagram.com/jermainegreaves/
Todd Davenport, PhD https://www.pacific.edu/campus-directory/todd-davenport
Alba Azola, MD https://profiles.hopkinsmedicine.org/provider/alba-azola/2707119

RECOVER-TLC Patient Input https://recovercovid.org/news/nih-invites-public-participation-inform-future-long-covid-clinical-trials

RECOVER-TLC videos https://youtube.com/playlist?list=PLqByiC0rX0ZOAlM0l0dCSefm-GvYHCBr_&si=M1YBjCm6RbvziBJ2

CURE-ID https://cure.ncats.io/

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This is the audio voiceover for my October Substack article, an overview of my month living with Long COVID

This month I discuss how I was took on big projects without severely crashing. We discuss the ways I pace, even when it looks like I'm pushing.

Join the community on Substack. Longcovidmd.substack.com

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Summary

In this conversation, Dr Zeest Khan and Visible founder Harry Leeming discuss the innovative use of biometric tracking in managing long COVID and other chronic illnesses. They explore the significance of heart rate variability (HRV), the role of wearable technology, and the importance of pacing in symptom management. The discussion also highlights the impact of the menstrual cycle on health and the resources available through Visible, a company dedicated to improving health outcomes for those with chronic conditions.

MakeVisible.com

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Today I'm answering questions from listeners and online friends. We discuss:
-How to find a Long COVID doctor
-Best(?) meds to use during a COVID infection
-Pediatric LongCOVID 
-Dental work and anesthesia

Leave me a voice note here: https://www.speakpipe.com/msg/s/371091/1/5ftvm7bekf0v0vrj

Support the show here:
https://www.amazon.com/hz/wishlist/ls/5EAAQUNVKP3K?ref_=wl_share

Substack Q&A
https://longcovidmd.substack.com/p/q-and-a-with-dr-k-long-covid-surgery?r=478j9x

Pediatric resources
Amy Mooney: OT4ME.com
Bateman-Horne Center: https://batemanhornecenter.org/
LongCOVDKids: https://www.longcovidkids.org/

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Occupational therapist Amy Mooney focuses her practice on people with fatiguing diseases like ME/CFS and Long COVID. She joins me to discuss how occupational therapy can be a valuable addition to your recovery program. Finding ways to engage in our lives, to do the things we want to do, is at the heart of occupational therapy.

Amy shares how she has modified her practice to empower people with fatigue, and suggests ways you can engage with an occupational therapist near you.

Amy Mooney
OT4ME.com
Amy is a private practice occupational therapist specializing in therapeutic care for individuals with chronic conditions involving Post-Exertional Malaise (PEM) and Post-Exertion Symptom Exacerbation (PESE). With over 25 years of OT experience, her telehealth practice focuses on conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, and related co-morbid conditions such as dysautonomia, Ehlers-Danlos syndrome, Mast Cell Activation Syndrome, and Fibromyalgia.
Amy's “Pacing for PEM” guidelines and therapeutic strategies have been featured in national and international conferences, continuing education programs for medical professionals, and paƟent advocacy webinars. Drawing on her extensive background in diverse seƫtings, including schools, home health, and clinics, Amy
brings a comprehensive understanding of paƟent needs to her practice. As a caregiver to a loved one with ME/CFS, she has a deep, personal understanding of the challenges faced by individuals and families in seeking
appropriate care. Her approach is rooted in compassion, focusing on symptom management, pacing strategies, and adaptive interventions to enhance the quality of life for her clients.
Amy has a bachelor’s degree from Loyola University Chicago, a master’s degree in occupational therapy from
Rush University Chicago and is a returned Peace Corp volunteer. Amy calls Chicago home.

Bateman-Horne Center
https://batemanhornecenter.org/

Amy on YouTube with SolveME
https://www.youtube.com/watch?v=w5Yt0BdeeN8

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Today I share an update on my health (all good things) and what I do to recover when I push myself too much, overdo it, and have post-exertional malaise.

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Dr Rachel Hall-Clifford is a medical anthropologist and a global health expert who has done extensive field work to improve systemic health inequities around the world. When she developed Long Covid after an infection in 2022, those systemic failures became a personal issue.
Dr Hall-Clifford wrote a powerful article on her experience with Long Covid and the role wealthy countries play in the global treatment of this disease. In our conversation, she speaks about her personal struggles and the universal need for Long Covid treatment.

"Long Covid Feels Like a Gun to My Head"
https://www.statnews.com/2024/06/18/long-covid-infectious-disease-expert-personal-story-life-with-no-cure/

"Underbelly: Childhood Diarrhea and the Hidden Local Realities of Global Health"
https://mitpress.mit.edu/9780262547765/underbelly/

safe+natal
www.safenatal.org

Dr Hall-Clifford's TedX Talk on Co-Design in global public health: https://www.youtube.com/watch?v=rvRAdsQ1_hA

Rachel Hall-Clifford (PhD, MPH, MSc) is Associate Professor in the Center for the Study of Human Health and the Department of Sociology at Emory University. She is a medical anthropologist who applies social science approaches to global health research and implementation. Her research areas include accessible health care for marginalized populations, health systems strengthening in post-genocide contexts, and global health fieldwork ethics. She is author of the new book, Underbelly, focusing on the multivalent power asymmetries in global health.  Rachel is also Co-Founder of safe+natal, a perinatal monitoring and care toolkit developed with Guatemalan midwives. Global health was brought home in a new way for Rachel since the covid infection that led to long covid in 2022. 

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