Long Covid, MD

AI is rapidly becoming part of how patients navigate complex illness—but most people are using it without understanding how it actually works, what it’s designed to do, or where it can fail.In this episode of Long Covid, MD, Dr. Zeest Khan is joined by two experts:Dr Leeda Rashid (former FDA physician, digital health) Dr Jennifer Curtin (CEO of RTHM Health) The discussion breaks down: What AI is already doing inside healthcare (and why that’s different from what you use at home)  Why tools like ChatGPT, Claude, and Gemini are not medical devices The risks of trusting AI-generated answers for diagnosis and treatment  How specialized tools like RTHM Intelligence attempt to address these gaps  The privacy trade-offs when sharing your medical data with AI  How to use AI safely and effectively as a patient This episode is a practical framework for using AI as a thinking partner—not a decision maker.⏱️ Chapter Markers00:00 – Why patients are turning to AI 03:15 – How AI is actually used in healthcare (FDA perspective) 07:30 – Why ChatGPT and similar tools aren’t medical devices 15:30 – Specialized AI tools vs general AI (RTHM example) 24:50 – Risks: hallucinations, bad advice, and doctor tension 26:30 – Privacy and HIPAA: what happens to your data 38:25 – How to use AI safely in your careSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

This is a clip from a Substack Live conversation with Zed Zha, author of Consented: A Doctor’s Call to End Medical Violence and Reclaim Patient Autonomy.Watch the full episode and sign up for the newsletter here.In this segment, we examine a pattern many patients recognize immediately, of having to ask their doctor questions in JUST the right way.This is a conversation about managing power, perception, and risk in every medical interaction. For patients, it's exhaustingIn this clip, we discuss:Why patients feel pressure to “perform” to be believedHow medical training and culture reinforce this dynamicThe impact of labels like “difficult” and “non-compliant”What patient autonomy should actually look like in practiceThis is one part of a longer, in-depth conversation on medical culture, consent, and the future of patient care.Subscribe to Long Covid, MD on SubstackYou’ll get:Full-length conversations like thisPhysician-level breakdowns of treatments and care decisionsLive discussions and workshopsChapters00:00 — The Performance Patients Have to MasterPatients describe navigating tone, behavior, and perception just to be taken seriously.02:15 — How Medical Culture Creates This DynamicTraining, hierarchy, and identity formation in medicine.04:30 — The Problem with “Difficult Patients”How labeling shifts responsibility away from the system.07:30 — Moving Toward Real CollaborationWhat a functional doctor–patient partnership looks like.10:30 — What Consent and Autonomy Actually MeanWhy consent is an ongoing process—not a form.Keywords (SEO)substack live interview, Zed Zha Consented, medical culture, patient autonomy, doctor patient relationship, medical gaslighting, difficult patient, healthcare system problems, long covid, chronic illness advocacySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Join the community at longcovidmd.comCaregiving can slowly reshape a relationship, often in ways people do not talk about. In this episode, Dr. Zeest Khan speaks with Kim Moy about the emotional and practical realities of long-term caregiving.YOU'LL LEARN:Why burnout creeps up slowly, and the early warning signs to watch forWhat "ambiguous loss" is and why naming it changes everythingHow to keep your relationship alive when illness takes overPractical tools: the task audit, the 5-minute morning ritual, and the "good jobs list"When and how to ask for help even when you have no budgetKim has spent more than 30 years caring for her husband who lives with ME/CFS while raising two children and working full time. She shares the idea of “ambiguous loss,” the grief of losing the person someone once was while they are still physically present, and why acknowledging that grief can help caregivers reconnect with their loved ones.Kim also shares practical tools she teaches caregivers. She explains how to spot early signs of burnout and how to keep illness from defining the entire relationship. She also shares simple daily practices that help caregivers restore their energy and recognize the invisible work they do.Listen to the episode to hear Kim’s insights and practical guidance for navigating caregiving while protecting your health and your relationship.Resources for chronic illness caregivers:Website & support resources: https://www.caregiverwisdom.netWeekly caregiver newsletter: https://newsletter.caregiverwisdom.netCaregiver burnout quiz: https://www.caregiverwisdom.net/burnoutquizSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Dr Anna Maria Bombardieri is a Stanford physician-scientist working with the NIH. She is helping design the RECOVER-TLC study on stellate ganglion block for long COVID. In this mini-episode, she explains the process, who's involved in this developing study, and what the goals are.Until March 3, 2026, the study design is available to review and open to public comments. Listen to Dr Bombardieri explain the study and watch/listen to our longer video explaining everything about stellate blocks. Watch on YouTube: https://youtu.be/CcGChFTZwvY Then, be part of the science! Share your input with RECOVER-TLC: https://recovercovid.org/news/recover-tlc-seeks-input-planned-study-possible-long-covid-treatmentJoin the LCMD community for support, science, and news. Sign up at http://LongCovidMD.com#longCOVID #COVID #fatigue #MECFS #POTS #medicine #scienceSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

👉 Free newsletter & resources: https://longcovidmd.comWatch the video on YouTube: https://youtu.be/CcGChFTZwvYCan a stellate ganglion block (SGB) help long COVID?In this episode, physician and long COVID patient Dr. Zeest Khan speaks with two experts to explain the science, patient experience, risks, and research behind this procedure now being studied in the NIH RECOVER program:-Dr. Anna Maria Bombardieri, physician-scientist helping design the NIH RECOVER study on SGB  https://med.stanford.edu/profiles/anna-maria-bombardieri-Dr. Sara Herman, anesthesiologist performing stellate ganglion blocks in clinical practice. https://softrebootwellness.com/YOU'LL LEARN:• What the stellate ganglion is and why blocking it may help autonomic symptoms• What the procedure feels like• Which long COVID symptoms may improve (brain fog, POTS, fatigue, smell/taste changes)• Side effects, variability, and realistic expectations• How to vet a provider and stay safeBE PART OF THE SCIENCE: The RECOVER-TLC study design is now open for public comment. Learn more at https://recovercovid.org/news/recover-tlc-seeks-input-planned-study-possible-long-covid-treatmentJoin the LCMD community for support, science, and news. Sign up at http://LongCovidMD.com#longCOVID #COVID #fatigue #MECFS #POTS #medicine #science Chapters:00:00 Understanding Stellate Ganglion Block (SGB) for Long COVID01:36 Personal Insights and Professional Perspectives on SGB02:36 Why SGB Got Attention05:20 How SGB Is Currently Used06:54 What's the Stellate Ganglion?11:35 Side Effects12:26 Anatomy Lesson You Need to Know17:07 TL;DR: SGB anatomy17:58 How SGB Can Reset the Nervous System23:46 Is SGB Permanent?25:58 What Does SGB Feel Like?33:15 Possible Results34:12 How to Find a Provider38:43 Can SGB Cure Long COVID?40:05 SGB Research40:29 TL;DR SummarySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

RECOVER-TLC released a public update on four major long COVID treatment trials. Many patients are asking the same question: how close are we to an approved treatment?In this episode, I break down how RECOVER-TLC chooses treatments to study, why the research process takes so long, and where each of the four current trials stands right now. I’ll also explain what this progress realistically means for people living with long COVID—without hype and without false hope.This is for people who want a clear, honest explanation of long COVID research and timelines, and who want to understand how close—or far—we really are from approved treatments.In this episode:-Why approved long COVID treatments take so long-How RECOVER-TLC selects and designs clinical trials-Updates on baricitinib, low-dose naltrexone, GLP-1 agonists, and stellate ganglion block-What this research means for patients right nowChapters:00:00 Understanding Long COVID and Research Delays01:43 The Process of Choosing Targets03:49 Designing Clinical Trials07:32 Join the Community08:25 Baricitinib09:54 Low Dose Naltrexone (LDN)11:08 Semaglutide: Exploring GLP-1 Treatments14:08 Stellate Ganglion Block16:52 Key Takeaways and Future Outlook#longCOVID #COVID #fatigue #MECFS #POTS #medicine #science #RECOVERTLC #NIH #FDA #NIAIDSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Many people with long COVID see early improvement—then hit a recovery plateau. In this episode, physician and long COVID patient Dr. Zeest Khan explains why long COVID recovery stalls and the three patterns she sees most often when progress gets stuck.Topics covered:Why long COVID recovery plateausThe push-crash cycle and energy envelopeMental health, grief, and decision-making in chronic illnessWhy trying treatments at random can backfireHow to think strategically instead of reactivelyEpisodes referenced:#43: Sensory Integration Therapy for Long COVIDSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

For immediate crisis support in the U.S., call or text 988 to reach the Suicide & Crisis Lifeline, offering free, confidential 24/7 help for mental health, substance use, or emotional distress via call, text, or chat.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Wondering whether to focus on treating Long COVID symptoms or finding the “root cause”? In this episode, Dr. Zeest Khan explains why chasing a cure can lead to false promises and wasted time—and why treating your most pressing symptoms is the fastest, safest way to improve quality of life. Learn how building small wins creates positive momentum, reduces hypervigilance, and empowers you to collaborate effectively with your doctors.Join the Community at longcovidmd.comSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

This week we're sharing an episode from the archive, Dr Khan's appearance on the medical podcast "Taking Healthcare By Storm." Dr Zeest Khan tells Dr Jean Storm about her long COVID journey and the lessons she’s learned as both a physician and a patient. They discuss peer support, medical uncertainty, and why claiming your own story can transform the way you navigate chronic illness. A candid, empowering conversation.Subscribe to the newsletter at  LongCovidMD.comSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

A quick life update.Learn about Alice Wong: https://x.com/doctor_zeest/status/1991929577841868847?s=20Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Dr Khan interviews Dr. Julia Moore-Vogel, Scripps Researcher and lead scientist of the new study using tirzepatide to treat Long COVID. The study is called LoCITT-T, and it is actively enrolling participants. They discuss the study's design, eligibility criteria, and the potential benefits of the drug. Julia shares her personal experience with long COVID and how it has influenced her work. The conversation also covers the importance of making clinical trials accessible to those with disabilities and the innovative use of wearable technology in the study.KeywordsLong COVID, tirzepatide, clinical trial, disability, wearable technologyResources:Long COVID Treatment Trial-Tirzepatide (LoCITT-T): https://www.longcovid.scripps.eduFatigue Severity Scale: https://www.med.upenn.edu/cbti/assets/user-content/documents/Fatigue%20Severity%20Scale%20(FSS).pdfFUN-CAP 27: https://batemanhornecenter.org/wp-content/uploads/2023/12/FUNCAP27-questionnaire.pdfDSQ-COVID: https://www.researchgate.net/publication/360476212_DePaul_Symptom_Questionnaire-COVIDEric Topol, MD Ground Truths: https://erictopol.substack.com/All of Us Research Hub: https://www.researchallofus.org/ Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Subscribe to the newsletter: longcovidmd.comIn this episode of Long COVID MD, Dr. Zeest Khan is joined by Katherine Marie, an nurse practitioner, long COVID patient, and podcast host. They discuss ways to navigate the holiday season while managing long COVID. They share personal experiences and strategies for maintaining health and energy, such as planning energy like a budget, setting boundaries, and building recovery time into schedules. The conversation highlights the importance of self-compassion and adapting traditions to fit current capabilities.Hear more from Katherine Marie: https://longcovidrealtalk.com/KeywordsLong COVID, holiday season, energy management, self-compassion, setting boundariesSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Read the Newsletter: https://longcovidmd.substack.com/p/nasal-sprays-a-sure-fire-way-to-reduce?r=478j9xJoin the Community: https://longcovidmd.substack.com/subscribeIn this episode, Dr. Zeest Khan discusses the importance of nasal hygiene in reducing inflammation and preventing infections. She shares practical tips and techniques, including the use of saline and oxymetazoline, to open congested nasal passages. Dr. Khan also highlights the role of nasal steroids and antihistamines in managing symptoms, especially for those with long COVID and allergies.Keywordsnasal hygiene, inflammation, saline, oxymetazoline, nasal steroids, antihistamines, long COVID, allergies, nasal passages, health tipsSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

In this conversation, Dr. Zeest Khan discusses how she manages acute infections while dealing with the ongoing effects of long COVID. To recover quickly and reduce side effects of medications, she teaches you to personalize your treatment. In this episode you'll learn the 4 categories of cold medicines, common side effects, and how to read a medication label effectively. Take exactly what you need, and ONLY what you need to recover from an upper respirator infection FAST.Links:Join the Community and Get the NewsletterNewsletter for this Episode available November 4, 2025. Sign up so you don't miss it!Hydration the Right WayChapters00:00 Personalized Cold Care Matters01:11 My Story02:08 Medical Disclaimer02:36 Understanding OTC Cold Meds03:03 Decongestants and Their Effectiveness03:48 Four Categories of Cold Meds04:08 Pain/Fever04:21 Pick the Right Decongestant04:58 Antihistamines Explained07:09 Side Effects of Decongestants07:57 Antihistamines09:01 Join the Community!09:19 Tailoring Treatment to Individual Needs09:52 Cough Meds11:05 Practical Application of Cold Care12:07 The Importance of Pain Management13:31 Personal Experience with Cold Treatment15:00 Why You Need Personalized Treatment15:36 Rest, Hydrate, & Stay PositiveSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Is scientific research vulnerable to political instability? Dr. Zeest Khan explains how the current US government shutdown could disrupt the billion-dollar NIH RECOVER project, delay clinical trials, and jeopardize the chances of discovering effective treatment. Guests Michael Sieverts and Ezra Spier share insider perspectives on why transparency, stable funding, and patient collaboration are essential to saving Long COVID research and restoring trust in science.Read more on this topic at SubstackReferenced Episodes:Tylenol-COVID ConnectionTakeaways from RECOVER-TLC 2025Episode 18: Long COVID AdvocacySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

I’m pleased to share this recording of my conversation with Dr Alyssa Burgart, a pediatric anesthesiologist and medical bioethicist who writes Poppies & Propofol. We discussed our concerns about the US Health Department’s new —and puzzling — claims that acetaminophen, the active ingredient in Tylenol, causes autism. We covered the importance of drug safety, the impact of misogyny in medical care, and the link to long COVID.If you missed my last post on the topic, read the full story here:If You Care About COVID, You Should Care About TylenolSubscribe to the newsletter: longcovidmd.substack.com/subscribeHelp with production costs by upgrading to a paid subscription or donating at Buy Me A Coffee.Episode 47: Is Health a Moral Obligation? https://www.buzzsprout.com/2253656/episodes/17011381Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

The NIH’s RECOVER initiative just held its 2nd annual workshop-- Pathways to Treatment — and here’s what you need to know. In this episode, Dr Khan shares key updates on Long COVID research from RECOVER 2025, including patient voices, new treatments under study, and where the research is headed next.Listen to Episode 19: Low Dose NaltrexoneWe’ll cover: ✔️ The role of patient advocates in shaping research ✔️ Interventions under study: low-dose naltrexone, baricitinib, GLP-1 receptor agonists, and stellate ganglion blocks ✔️ Challenges with access and equity in treatment ✔️ What’s next for clinical trials in Long COVIDAs both a physician and a patient with Long COVID, Dr Khan brings you a unique perspective on what this research means for patients, clinicians, and the future of care.🔔 Subscribe for more updates on Long COVID research, treatments, and patient perspectives. 👍 Like this episode if you find it helpful, and share it with others navigating Long COVID.More resources: 👉 Learn more about RECOVER: https://recovercovid.org 👉 Follow my work on Long Covid, MD: longcovidmd.substack.comKeywords: Long COVID research update, RECOVER 2025, NIH RECOVER TLC workshop, Long COVID new treatments, low dose naltrexone Long COVID, GLP-1 Long COVID, baricitinib Long COVID, stellate ganglion block Long COVID, Long COVID patient advocacy, Long Covid MDSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

🔔 Subscribe for more science-backed insights 📖 Read the full newsletter + reference sheet 💬 Share your experience with hydration strategies in the comments—I’d love to hear from you!Living with Long COVID or POTS often means battling dizziness, fatigue, and brain fog caused by low blood volume. In this episode, Dr Khan breaks down the science of hydration and explain how different fluids—plain water, salt water, and oral rehydration solutions (ORS)—actually work in your body.You’ll learn: ✅ Why plain water gives a quick but short-lived boost ✅ How salt water helps your body hold onto fluid ✅ Why oral rehydration solutions like WHO ORS and St. Mark’s formula can act almost like IV saline ✅ The difference between medical ORS and common sports drinks like Gatorade, Pedialyte, and Liquid IV ✅ How the sodium-glucose transporter (SGLT1) “supercharges” absorptionHydration is more than just drinking water—it’s about strategic plasma expansion to keep blood flowing to your brain and reduce symptoms of dysautonomia.⚠️ Safety note: Salt loading isn’t for everyone. Check with your doctor if you have kidney disease, heart failure, uncontrolled hypertension, or a tendency to swelling.👩‍⚕️ I’m Dr. Zeest Khan, a physician and patient with Long COVID. On Long Covid, MD, I simplify medical science to help you make better decisions about your care and recovery.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Watch the video on YouTubeCan IV fluids really help with Long COVID symptoms like fatigue, dizziness, and brain fog? In this episode, Dr Khan reviews the scientific evidence on IV hydration versus oral rehydration solutions (ORS) in children, athletes, and patients with POTS (postural orthostatic tachycardia syndrome)—and shares her personal experience as both a doctor and a patient living with Long COVID.You’ll learn:✔️ How IV fluids expand blood volume and why that matters in Long COVID✔️ The risks and complications of IV therapy (including when NOT to use it)✔️ What the research says about ORS vs. IV hydration in different groups✔️ Why IV fluids may serve as a temporary rescue therapy for some people with POTS or Long COVID✔️ Practical tips for safe IV use 💡 Whether you’re exploring treatment options or just curious about the science, this episode breaks down what we know—and what we don’t—about IV hydration in Long COVID.For links to studies and a printable summary of today's episode, subscribe to the newsletter.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Support Roots' Current Fundraising Campaign!LCMD will be away for the summer. Will Dr Khan post anything in the meantime?? Find out by following her: On the newsletter at longcovidmd.comOn TikTok @LongCovidMDOn Instagram @LongCovidMDIn this episode of Long COVID MD, Dr. Zeest Khan highlights a healthcare system that effectively mitigated the pandemic and maintained community trust, while facing numerous structural obstacles. Should we follow this model of medicine more broadly? She interviews Dr. Noha Aboelata, Family Medicine physician and CEO of Roots Community Health, who shares insights on Root's holistic approach to healthcare, the importance of community trust, and the need for accessible and equitable health services. Roots played a tremendous role in the beginning of the COVID-19 pandemic. The organization offered testing, recognized patterns of viral spread, and shared critical information with the public before, and sometimes in place of, government agencies. Roots' model of rebuilding community trust allowed them to respond quickly and effectively against the COVID-19 pandemic, and continues to serve the community well. The conversation highlights the role of community health in addressing systemic inequities and the significance of empowering patients to advocate for their own health.People's Health BriefingHow Roots Pushed Medtronic to Improve Pulse OximetrySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Enjoy Dr Khan's guest appearance on the Outrage Overload podcast. Hosted by David Beckemyer, Outrage Overload explores how outrage media fuels political polarization and stress. David and Dr Khan discuss how the unprocessed grief of a pandemic has contributed to our current polarized social climate.-----------------------------------------------------------------How a Doctor’s Long COVID Journey Exposed Systemic FailuresMillions are still living with long COVID, yet many patients are dismissed, misunderstood, or left without answers. In this episode, Dr. Zeest Khan shares her personal journey—from treating critical patients as a cardiothoracic anesthesiologist to becoming a long COVID patient herself.This conversation isn’t just about COVID—it's about how we listen, how we heal, and what needs to change.Guest:Dr. Zeest Khan, physician, long COVID advocate, and host of Long COVID MD podcast.Text me your feedback and leave your contact info if you'd like a reply (this is a one-way text). Thanks, DavidSupport the showShow Notes:https://outrageoverload.net/Follow me, David Beckemeyer, on Twitter @mrblog or email [email protected]. Follow the show on Twitter @OutrageOverload or Instagram @OutrageOverload. We are also on Facebook /OutrageOverload.HOTLINE: 925-552-7885Got a Question, comment or just thoughts you'd like to share? Call the OO hotline and leave a message and you could be featured in an upcoming episodeIf you would like to help the show, you can contribute here. Tell everyone you know about the show. That’s the best way to support it.Rate and Review the show on Podchaser: https://www.podchaser.com/OutrageOverloadIntro music and outro music by Michael Ramir C.Many thanks to my co-editor and co-director, Austin Chen.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Buy Me A CoffeeSummaryIn this conversation, Dr. Zed Zha and Dr. Zeest Khan discuss the complexities of the patient-doctor relationship, particularly in the context of Long COVID. They explore the systemic issues that lead to mistrust in the medical system, the importance of patient advocacy, and the need for a shift in medical culture towards collaboration and understanding. Dr. Zha shares insights from her platform, 'Ask the Patient,' where she gathers feedback from patients to improve medical practice. The discussion emphasizes the need for physicians to recognize their power dynamics with patients and to adopt more compassionate, patient-centered approaches in their care.Dr Zed Zha, MDZed is a physician and author. As a medical culture critic, she is committed to addressing critical issues such as medical misogyny, racism, anti-fatness, and ableism. As a feminist patient advocate, her writing brings to light the often-unspoken challenges within the healthcare system that fracture trust between patients and clinicians and find the common path for us to move forward together. Her nonfiction book defining medical consent is currently in the process of being acquired. Zed is also a storyteller. Her upcoming nonfiction children's book titled Why We Eat Fried Peanuts: A Celebration of Family and Lunar New Year, comes out in January 2025 by becker&mayer! Her Iive performance about her thieving mother is available on The Noturnists Podcast and on Youtube by the Bellevue Literary Review.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Buy Me A CoffeeSummaryIn this conversation, Dr Zeest Khan speaks with Dr. Katie Brown, who shares her journey as a family doctor and a patient with ME/CFS. She discusses the complexities of diagnosing and treating long COVID, particularly focusing on the role of cranio-cervical instability (CCI) and its impact on patients' health. Dr. Brown emphasizes the importance of understanding the symptoms, the challenges in accessing proper care, and the need for collaboration among healthcare providers to improve patient outcomes. She also offers insights into treatment options and encourages both patients and doctors to take ownership of their health and care.BioDr Katie Brown: Katie Brown, MD has dedicated her career to learning how to treat ME/CFS and related conditions, including Long COVID. Her interest stems from her own experience with the disease which she developed during her first year of medical school. She is very grateful to now be in remission and have the chance to use all she has learned, both as a doctor and a patient, to support others with ME/CFS. The clinical uncertainty around ME/CFS should not mean that patients don't get help. In order to educate and encourage other doctors to treat ME/CFS, she is writing a book outlining best practices for primary care doctors. You can sign up to her newsletter to be notified when the book is published. Sign up for Dr Brown's newsletter: https://www.katiebrownmd.com/newsletterDr Brown's CFS website: https://chronicfatiguedoctornearme.com/Dr Brown's notes on UCI, updated regularly: https://publish.obsidian.md/gsdpc/Publish/Patient+Resources/Cervical+Instability   Additional Resources:Project ECHORessek et al Presentation and physical therapy management of upper cervical instability The Sick Times article on craniocervical instabilitySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Buy Me A CoffeeIn this episode of Long COVID MD, Dr. Zeest Khan discusses the financial challenges faced by individuals with long COVID and chronic illnesses. She interviews Kira Stoops, a writer and advocate, who shares her personal journey with chronic illness, the importance of asking for help, and the value of building community. They explore the realities of managing finances while living with a disability, the stigma around seeking assistance, and the tools that can aid in adapting to new life circumstances. Kira emphasizes the importance of self-compassion and the need to cut oneself some slack while navigating these challenges.Kira StoopsKira is a writer who is chronically ill. Despite having ME/CFS for nearly a decade, she's determined to live the good life: close connections, moments of sunshine, meaningful work, and snarky humor. Find more of her work at Flying Bicycle Creative, her (free!) Meatscon tool for sickies here, and her Substack about luxe sickie life here. Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Buy Me a CoffeeIs being healthy a personal virtue, or a civic duty? And how should you be treated if you're not healthy?In this episode of Long Covid, MD, Dr. Zeest Khan is joined by Dr. Alyssa Burgart, pediatric anesthesiologist and bioethicist, for a timely conversation on healthism—the idea that health is a moral responsibility—and how it's shaping everything from doctor-patient relationships to public health policy.Together, they explore:What healthism is and why it matters now more than everHow figures like RFK Jr. and Dr. Mehmet Oz are using morality and patriotism to frame health in political termsWhat these narratives mean for people with Long COVID and other chronic illnessesHow blame and bias show up in the clinic—and how both patients and clinicians can push backWhy trauma-informed care is critical for healing, not just treatmentThis episode offers practical insight and ethical clarity for anyone navigating illness in a society that often treats sickness as a personal failure.Read more of Dr Burgart's work on SubstackSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Buy Me a CoffeeOn this special bonus episode, we share Dr Zeest Khan's guest appearance on the podcast "Taking Healthcare By Storm" hosted by Dr Jean Storm, medical director of Quality Insights.Dr. Khan shares her journey with long COVID, highlighting the importance of peer support, symptom validation, creative treatment approaches, and trusted information sources. She emphasizes the need for curiosity and compassion in healthcare providers managing long COVID patients. Learn more about Dr. Khan by listening to her podcast or by visiting her website or Substack.If you have any topics or guests you'd like to see on future episodes, reach out to us on our website.Publication number QI-040425-GKSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Dr Khan's month in review. What happened in March for the podcast? What will federal cuts to CDC, NIH, FDA and RECOVER mean for long COVID patients? How can we participate in and celebrate holidays like Ramadan, given our physical limitations? Plus a new monthly segment that's more light-hearted called "What's Making Me Happy".What's your rundown and what's making you happy?LinksMichael Lewis' Essay on Heather StoneThe ResidenceSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Join the next LivestreamBuy Me A CoffeeIn this episode of Long Covid MD, Dr. Zeest Khan shares audio from her recent Substack Live event. How can you tell if a medical appointment or treatment is helpful or if it's doing more harm than good? Dr Khan shares insights from her personal journey with Long COVID and answers questions from the group. Together, they discuss the complexities of navigating the healthcare system. Dr Khan emphasizes the importance of intentionality in medical appointments, the need for patient empowerment, and the significance of having a primary care provider as a home base. The conversation also covers the challenges of managing multiple appointments, the importance of clear communication with healthcare providers, and strategies for ensuring accurate medical documentation. Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

SummaryIn this conversation, Dr Zeest Khan and occupational therapist Amy Mooney discuss sensory processing disorders, which seem to be triggered by a COVID infection. They discuss the implications for individuals with long COVID, and the importance of tailored occupational therapy approaches. They also explore how chronic illness affects sensory integration, the challenges faced by patients, and the need for medical recognition of sensory processing issues. Amy emphasizes the importance of listening to one's body and adapting therapy to individual needs, particularly for those with fatigue-related conditions.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

In this episode, Dr Zeest Khan is joined by Dr Jean Storm, a specialist in long-term care medicine and the medical director of Quality Insights, a healthcare quality improvement organization. Dr Storm worked as a physician in nursing homes during the height of the COVID-19 pandemic and now she's urging us to recognize the impact of long COVID in this population.Dr Khan and Dr Storm discuss the needs of long-term care residents, how long COVID presents and how it is often overlooked. Dr Storm explains ways to advocate for loved ones in nursing homes and strategies to avoid severe COVID infections in long-term care. LinksDr Storm's Podcast: Taking Healthcare by StormFunction Calculator: Barthel Index for Activities of Daily LivingResources for COVID-19 treatment, surveillance, and vaccinations in the long-term care population: https://covid.nymda.orgArticlesNursing Home Staffing Levels and Resident Health Outcomes: Is the Role of the Physical Therapist Undervalued? Prevalence and Predictors of Persistence of COVID-19 Symptoms in Older Adults: A Single-Center StudyAudio engineering by True Media SolutionsSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

What do you do when you just want a break from being sick? In this month's episode of The Rundown, Dr Zeest Khan shares her ongoing journey with long COVID, discussing the frustrations and challenges she faces in recovery. She reflects on the medical treatments she has undergone, the importance of reliable information, and the emotional toll of navigating the complexities of this condition. Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Read a summary of our conversation here, and sign up for my newsletter to receive summaries of each podcast episode and more at LongCovidMD.substack.comDr. Melanie Hoppers is a board-certified physician in both adult and pediatric medicine, and is a consultant at the Bateman-Horne Center. In this conversation, Dr Hoppers shares her extensive experience treating children with post-viral illnesses, particularly ME-CFS and long COVID. She discusses her personal journey as a parent of a child with ME-CFS, and the challenges her family faced in finding appropriate care - challenges that parents of long COVID kids continue to face today. Dr. Hoppers emphasizes the importance of pacing, parental advocacy, and the need for better medical education on these conditions. She also outlines treatment options and encourages parents to find joy and support in their journey.Audio Engineering by True Media SolutionsSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Record a Voice NoteSummaryIn this episode of Long Covid, MD, Dr. Zeest Khan shares personal updates from January, highlighting recent projects to educate other medical professionals on long COVID. She explains some of the ways long COVID impacts executive function and how she utilizes Speech and Language Pathology to improve cognition. She also reflects on the impact of social media on mental health and the need for community support among those affected by chronic illness. Long COVID Project ECHO presentationTimer Cube Cognitive Rehab via Speech and Language PathologySupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

In this episode of Long COVID, MD, Dr. Zeest Khan shares highlights from her recent Project ECHO webinar, sponsored by the University of Utah and the Bateman Horne Center. Drawing from her personal journey and clinical expertise, she introduces actionable strategies to manage the complex and often overwhelming nature of Long COVID.Subscribe to Dr. Khan's newsletter at longcovidmd.substack.com.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

In this conversation, Stanford psychologist and behavioral sleep specialist Dr. Hylton Molzof joins Dr Khan to discuss the complexities of sleep. They focus particularly on insomnia in chronic illness, and the role of Cognitive Behavioral Therapy for Insomnia (CBTI). They discuss the physiological stages of sleep, the impact of chronic illness on sleep patterns, and practical strategies for managing sleep-related anxiety. Dr. Molzof emphasizes the importance of adapting CBTI techniques for individuals with chronic conditions, especially in the context of long COVID. The conversation also covers the significance of sleep evaluation and the nuances of sleep restriction as a treatment method.Find printable worksheets and resources Dr Molzof has shared at https://substack.com/home/post/p-154561158?source=queue&autoPlay=falseSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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.comFeatured episodes:Don’t Sleep on Your Power: Senator Lindsey Port on Long COVID AdvocacyBuilding Solutions with the Long COVID Moonshot InitiativeFollow and Support: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!Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Send me a voicemail: speakpipe.com/longcovidmdIn 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@AzolaAlbaBioAssistant 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.Audio engineering by True Media Solutions https://truemediasolutions.ca/Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Leave me a voicemail: speakpipe.com/longcovidmdLindsey 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 Porthttps://www.instagram.com/lindseyportmn/https://www.lindseyportmn.com/https://bsky.app/profile/lindseyportmn.bsky.socialSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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=478j9xSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Ask me a question at speakpipe.com/longcovidmdIn 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/195354Audio engineering by True Media Solutions Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Record a voicemail: https://www.speakpipe.com/LongCovidMD 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/longhaulJermaine Greaves https://www.instagram.com/jermainegreaves/Todd Davenport, PhD https://www.pacific.edu/campus-directory/todd-davenportAlba Azola, MD https://profiles.hopkinsmedicine.org/provider/alba-azola/2707119RECOVER-TLC Patient Input https://recovercovid.org/news/nih-invites-public-participation-inform-future-long-covid-clinical-trialsRECOVER-TLC videos https://youtube.com/playlist?list=PLqByiC0rX0ZOAlM0l0dCSefm-GvYHCBr_&si=M1YBjCm6RbvziBJ2CURE-ID https://cure.ncats.io/Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

Send me a voicemail https://www.speakpipe.com/LongCovidMDThis is the audio voiceover for my October Substack article, an overview of my month living with Long COVIDThis 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.comSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

SummaryIn 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.comSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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 anesthesiaLeave me a voice note here: https://www.speakpipe.com/msg/s/371091/1/5ftvm7bekf0v0vrjSupport the show here:https://www.amazon.com/hz/wishlist/ls/5EAAQUNVKP3K?ref_=wl_shareSubstack Q&Ahttps://longcovidmd.substack.com/p/q-and-a-with-dr-k-long-covid-surgery?r=478j9xPediatric resourcesAmy Mooney: OT4ME.comBateman-Horne Center: https://batemanhornecenter.org/LongCOVDKids: https://www.longcovidkids.org/Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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 MooneyOT4ME.comAmy 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, Amybrings 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 seekingappropriate 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 fromRush University Chicago and is a returned Peace Corp volunteer. Amy calls Chicago home.Bateman-Horne Centerhttps://batemanhornecenter.org/Amy on YouTube with SolveMEhttps://www.youtube.com/watch?v=w5Yt0BdeeN8Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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.Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

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+natalwww.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. Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

LongCovidMD.substack.comLongCovidMD.comIn this episode of The Medicine Cabinet series, I explain how Metformin, a drug we often associate with diabetes, helps acute covid and may help Long Covid.Metformin is an old, relatively inexpensive medication that has many established off-label uses. I explain its mechanisms of action, who it might be right for, and I discuss the recently published COVID OUT research findings that supported metformin's use in acute infection. It reduces hospitalizations, death, and the development of Long Covid.What does that mean for those of us who already have Long Covid? I share my opinions. Research LinksCOVID OUT metformin dose used: 500mg on Day 1, 500mg twice daily on Days 2-5 and 500mg in the AM and 1,000mg in the PM on Days 6-14https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214027/https://www.medrxiv.org/content/10.1101/2023.06.06.23290989v1https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext#%20https://academic.oup.com/cid/article/79/2/354/7660393?login=falsehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10595158/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9111510/#:~:text=Recent%20evidence%20has%20shown%20that,has%20immunomodulatory%2C%20anti%E2%80%90inflammatory%2CCURE-ID Databasehttps://cure.ncats.io/homeSupport the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee

[email protected] podcast, like Long Covid, has a global reach. Whether we see one another or not, we are part of a new community. And this community, while struggling, is pretty amazing. Today I highlight the diverse location of listeners, to remind you that you are not alone in your struggle.  Did I give your town a shout-out? Did I miss it? Support the showSubscribe for free written summaries of each episode, resources, and more.  LongCovidMD.substack.com/subscribeSupport by donating at BuyMeACoffee