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Happy 2025! In this special New Year’s episode of Long COVID MD, Dr. Zeest Khan reflects on an invaluable piece of wisdom from Mr. Rogers: “Look for the helpers.”

Navigating Long COVID is anything but straightforward, but this timeless advice serves as a guiding principle. Dr. Khan breaks it down into three actionable steps to help you identify the assistance you need, avoid detractors, and—perhaps the hardest part—learn to receive help with grace.

Resources and Links:

• Subscribe to Long COVID MD on Substack: longcovidmd.substack.com
• Featured episodes:
  • Don’t Sleep on Your Power: Senator Lindsey Port on Long COVID Advocacy
  • Building Solutions with the Long COVID Moonshot Initiative

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Subscribe to stay updated on new episodes and bonus content. Let us know your thoughts, questions, and New Year’s resolutions by emailing us or commenting on Substack!

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In this conversation, Dr. Khan discusses the impact of the autonomic nervous system in Long COVID, with Dr. Alba Azola, Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins University.  Dr Azola explains the complexities of autonomic dysfunction, particularly focusing on dysautonomia and POTS, and how these conditions affect patients' daily lives. The discussion highlights the importance of a patient-centered approach in rehabilitation and the need for a multidisciplinary team to address the various symptoms and challenges faced by long COVID patients. In this conversation, Drs Azola and Khan delve into the complexities of dysautonomia, particularly in the context of long COVID and mast cell activation syndrome. They discuss the importance of understanding autonomic dysfunction, the role of mast cells in various symptoms, and the need for a collaborative healthcare approach. The conversation emphasizes non-pharmacologic interventions, the significance of tailored exercise programs, and the various medications available to manage symptoms. Ultimately, they highlight the importance of patient empowerment and finding healthcare providers who are willing to listen and collaborate.

Dr Alba Azola, MD
@HopkinsMECFSC
@AzolaAlba

Bio

Assistant Professor, Departments of Rehabilitation and Physical Medicine and Pediatrics, Johns Hopkins Medical Center. Director of the Long COVID Chronic Fatigue Syndrome Clinic and Co-director of the JH-UTSW Brain Health Program. She is a co-investigator in several NIH, PCORI, and CDC-sponsored studies on Long COVID. As part of the AAPMR PASC collaborative, she has co-authored several guidance statements on managing Long COVID symptoms, including fatigue, dysautonomia, and cardiovascular complications.

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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

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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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