Long Covid, MD

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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.

Timestamps

00:00 - 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 closing

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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 case

Resources Mentioned in This Episode

• Social 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) 866-444-6939
• Workwell 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 disability
• Project ECHO
  Webinar series referenced in the episode (including sessions on disability and chronic illness) 

Key Tools & Concepts Referenced

• NASA 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 claims

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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 stress

Stephanie 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.

Chapters

00:00 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 Takeaways

Key Takeaways

• Elimination 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 Weaver

Stephanie 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, MD

If 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 

Disclaimer

This 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 triggers

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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 Markers

00:00 – 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 care

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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 exhausting

In this clip, we discuss:

• Why patients feel pressure to “perform” to be believed
• How medical training and culture reinforce this dynamic
• The impact of labels like “difficult” and “non-compliant”
• What patient autonomy should actually look like in practice

This 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 Substack

You’ll get:

• Full-length conversations like this
• Physician-level breakdowns of treatments and care decisions
• Live discussions and workshops

Chapters

00:00 — The Performance Patients Have to Master
Patients describe navigating tone, behavior, and perception just to be taken seriously.

02:15 — How Medical Culture Creates This Dynamic
Training, 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 Collaboration
What a functional doctor–patient partnership looks like.

10:30 — What Consent and Autonomy Actually Mean
Why 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 advocacy

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Join the community at longcovidmd.com

Caregiving 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 for
• What "ambiguous loss" is and why naming it changes everything
• How to keep your relationship alive when illness takes over
• Practical 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 budget

Kim 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.net
• Weekly caregiver newsletter: https://newsletter.caregiverwisdom.net
• Caregiver burnout quiz: https://www.caregiverwisdom.net/burnoutquiz

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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-treatment


Join the LCMD community for support, science, and news. Sign up at http://LongCovidMD.com

#longCOVID #COVID #fatigue #MECFS #POTS #medicine #science

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

👉 Free newsletter & resources: https://longcovidmd.com

Watch the video on YouTube: https://youtu.be/CcGChFTZwvY

Can 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 safe

BE 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-treatment

Join 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 COVID
01:36 Personal Insights and Professional Perspectives on SGB
02:36 Why SGB Got Attention
05:20 How SGB Is Currently Used
06:54 What's the Stellate Ganglion?
11:35 Side Effects
12:26 Anatomy Lesson You Need to Know
17:07 TL;DR: SGB anatomy
17:58 How SGB Can Reset the Nervous System
23:46 Is SGB Permanent?
25:58 What Does SGB Feel Like?
33:15 Possible Results
34:12 How to Find a Provider
38:43 Can SGB Cure Long COVID?
40:05 SGB Research
40:29 TL;DR Summary

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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 now

Chapters:
00:00 Understanding Long COVID and Research Delays
01:43 The Process of Choosing Targets
03:49 Designing Clinical Trials
07:32 Join the Community
08:25 Baricitinib
09:54 Low Dose Naltrexone (LDN)
11:08 Semaglutide: Exploring GLP-1 Treatments
14:08 Stellate Ganglion Block
16:52 Key Takeaways and Future Outlook

#longCOVID #COVID #fatigue #MECFS #POTS #medicine #science #RECOVERTLC #NIH #FDA #NIAID

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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 plateaus
• The push-crash cycle and energy envelope
• Mental health, grief, and decision-making in chronic illness
• Why trying treatments at random can backfire
• How to think strategically instead of reactively

Episodes referenced:

#43: Sensory Integration Therapy for Long COVID

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