Long Covid, MD

Subscribe to the Long Covid, MD newsletter for more long COVID content. Voiceover is available for every newsletter on the Substack app.Evaluating Long COVID Research, Treatments, and Medical Misinformation. Today's episode is a cross-post from The Sick Times' podcast "Still Here." In my conversation with hosts and journalists Miles Griffis and Betsy Ladyzhets, we discuss ways people with long COVID can better judge research, treatments, and online claims without getting overwhelmed by hype or pseudoscience. I also explain my approach to reading studies, thinking through off-label treatments, and spotting red flags in medical content.Timestamps00:00 - Opening and why this episode matters for the long COVID community 02:35 - Dr. Khan introduces herself and her path from ICU physician to long COVID patient 04:41 - Why long COVID care still falls short and medicine has not caught up 08:28 - How off-label treatments work and how patients can think about them 12:28 - Dr. Khan’s process for reading a clinical trial or research paper 17:12 - How to bring research to a clinician without getting dismissed 20:48 - Choosing between sequential treatment and trying multiple interventions at once 24:20 - Triaging the most painful problem first in a complex illness 26:31 - Why long COVID care feels overwhelming and why prioritization helps 27:01 - Spotting pseudoscience and misinformation in long COVID content 30:06 - Red flags: certainty, conspiracies, “root cause” language, and brain retraining claims 33:22 - Staying hopeful and remembering long COVID patients are not alone 34:35 - Research update: skeletal muscle abnormalities in long COVID and ME 35:15 - Research update: large genetic study links fibromyalgia to the central nervous system 36:01 - Research update: racial disparities in long COVID diagnosis 36:48 - Credits and closingSupport the showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Applying for Social Security Disability Insurance (SSDI) with Long COVID or ME/CFS is complex—and often discouraging. Many people are denied early and don’t understand why.In this episode, Dr Khan speaks with disability attorney Barbara Comerford, who has spent 30+ years helping clients navigate disability claims for complex, hard-to-document conditions.We break down: How SSDI actually works (and who qualifies)  Why most claims are denied—and what that really means  The 5-step process Social Security uses to evaluate your case  What evidence matters for conditions like Long COVID  When to hire a lawyer—and how to strengthen your claim This is a practical guide to help you understand the system and make more informed decisions.Chapter Markers (Streamlined)00:00 Why SSDI matters for Long COVID 06:45 Who qualifies + how SSDI actually works 12:30 The 5-step disability evaluation process 25:00 Why claims get denied (and how to appeal) 40:30 Evidence, lawyers, and how to strengthen your caseResources Mentioned in This EpisodeSocial Security Administration (SSA) https://www.ssa.gov/ Check your earnings record and quarters of coverage to confirm SSDI eligibility. Tri-State Disability Law Barbara Comerford’s law firm (SSDI and long-term disability cases) 866-444-6939Workwell Foundation Guidance on cardiopulmonary exercise testing (CPET) and instructions for the NASA Lean Test (dysautonomia assessment) Bateman Horne Center Educational resources on ME/CFS, Long COVID, and disabilityProject ECHO Webinar series referenced in the episode (including sessions on disability and chronic illness) Key Tools & Concepts ReferencedNASA Lean Test – low-cost way to document dysautonomia symptoms CPET (Cardiopulmonary Exercise Testing) – objective measure of exertional intolerance Neuropsychological Testing – documents cognitive impairment (brain fog, processing speed) Symptom Journaling – daily tracking of function (sitting, standing, cognitive stamina) to support claimsSupport the showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

Is there a “right” diet that will help me feel better?From low-carb to keto to anti-inflammatory diets, the internet is full of strong opinions—and conflicting results. Some people swear by these approaches. Others try them and stop quickly because they’re too hard, too restrictive, or simply don’t work.In this episode of Long Covid, MD, Dr. Zeest Khan sits down with food writer and chronic illness advocate Stephanie Weaver to unpack a more realistic and sustainable approach to diet.This conversation focuses on: how to think about food triggers what elimination diets are actually for  why strict diets can backfire  and how to approach dietary changes safely and without added stressStephanie shares her personal experience living with multiple chronic conditions, including migraine disease, and explains how she developed a step-by-step approach to identifying food triggers—without falling into rigid or overwhelming diet rules.If you’re considering changing your diet to improve symptoms, this episode will help you think through that decision in a more grounded, practical way.Chapters00:00 Diet & Chronic Illness 03:03 Stephanie’s Story 08:37 Food Triggers Explained 11:38 Risks of Restrictive Diets 15:55 A Safer Approach 20:33 Key TakeawaysKey TakeawaysElimination diets are not one-size-fits-all They are a tool to identify your specific triggers—not a universal solution. Strict diets can increase stress and backfire Overly restrictive plans can add emotional and physical strain, especially in chronic illness. A gradual, flexible approach works better Slow, intentional changes are more sustainable—and more informative. About Stephanie WeaverStephanie Weaver is a food writer, public health professional, and chronic illness advocate. She developed The Migraine Relief Plan, a structured approach to identifying food triggers for migraine disease.She is also the author of:The Migraine Relief Plan (cookbook + program) Bitter Sweet (memoir about chronic illness, food, and family) Connect with Stephanie Weaver Website: https://stephanieweaver.com Social: @sweavermph (all platforms) More from Long Covid, MDIf you want deeper dives into treatments, research, and how to navigate complex illness:👉 Subscribe to the newsletter: https://longcovidmd.com Physician-written breakdowns of treatments  Practical strategies for navigating care  Audio versions available for every article DisclaimerThis content is for educational purposes only and does not constitute medical advice. Always consult your healthcare provider before making significant changes to your diet or treatment plan.Keywords (for search optimization)elimination diet chronic illness, food triggers migraine, diet and inflammation, long covid diet, elimination diet safety, chronic illness nutrition, anti inflammatory diet, migraine diet triggersSupport the showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 20 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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

👉 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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.

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 showSign up for the free Long Covid, MD newsletter for more science, validation, and strategies to regain your health.