We can help you find the resources that fit your needs.
To get connected with medical and community resources for Long COVID in the St. Louis area, contact:
Don’t know where to start?
Integrated Health Network
Community Referral Coordinator
Joyce Driver
314-571-0874 or [email protected]
For Patients
Long COVID is real.
What you need to know about Long COVID:
- Interactive website
- Downloadable Flyer: Official definition of Long COVID and important facts
- Hear from local patients and doctors
Talk to your primary care doctor if you recently tested positive for COVID infection.
- Some medications might lower your risk of getting Long COVID.
- Your doctor can find up-to-date research on these medications here.
Talk to your primary care doctor
- Your primary care doctor can start the diagnosis and treatment process.
- Prepare for your visit: Before, during, and after
- When needed, your primary care doctor can refer you to more resources for Long COVID medical care.
If you don’t have a primary care doctor (or don’t have health insurance), we are here to help.
- Contact Us, and we’ll help you get connected.
When needed, your primary care doctor may refer you to:
- The Affinia Healthcare Long COVID clinic
- Long COVID services at Washington University such as:
- Other medical, rehabilitation, or mental health subspecialists
Visit the Long COVID Information Service if you would like to print helpful worksheets, learn about ways a loved one can support you, or read more about scientific findings.
Resource navigators
- Call 211 for help connecting with the resources listed here and with other resources like air conditioning, bedding and furniture, burial and cremation services, and more.
- Start Here St. Louis Area Resource Directory – Search resources near your zip code
- Mercy Neighborhood Ministry’s resource lists – Includes resources for medical equipment, sewer assistance, pets, and more
- Missouri’s state aid programs
Self-management tools
- Long COVID self-management workbook – By Care Opinion
- Managing fatigue and post-exertion symptom exacerbation – By World Physiotherapy
- Pacing and heart rate monitoring – By World Physiotherapy
- Breathing exercises for lung health, anxiety, and stress – By World Physiotherapy
- Long COVID Breathing and Wellness Program – Free online program by the Beth Israel Deaconess Medical Center
- Supporting mental wellness for yourself or a loved one with Long COVID – By Beth Israel Deaconess Medical Center
- Yoga for Long COVID – Suzy Bolt’s YouTube channel
Long COVID peer support
- St. Louis Long COVID Initiative peer support group – In-person and virtual meetings facilitated by a social worker
- Midwest & Beyond Long COVID support group – Private Facebook group
- Young COVID survivors (Under 35) support group – Private Facebook group
- Black COVID-19 Survivors Alliance support group – Private Facebook group
- Mayo Clinic Long COVID support group
- Other virtual peer support groups
- “The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next” by Fiona Lowenstein. Available at the St. Louis Public Library and St. Louis County Library
- “The Long COVID Reader: Writing and Poetry from 45 Long Haulers” edited by Mary Ladd, Andrew David King, and Regan McMahon. Available from Amazon
Legal
- Legal Services of Eastern Missouri – Free for people with low income and older adults
- Allsup
Transportation
- Medical transportation – Also call your health insurance company to ask about coverage for transportation to medical visits
- Metro Call-A-Ride
- St. Louis Metro reduced fare application
Mental health support
- 988 Suicide and crisis lifeline – Available 24/7 to call, text, or chat
- Community Psychological Service
- Epworth Psychological Services
- SSM Health Behavioral Health Urgent Care – Walk-in clinic dedicated to mental health
- Counseling centers in Missouri with sliding scale payment
Health insurance
- Missouri Medicaid application (855-373-9994)
- Illinois Medicaid application (1-800-843-6154)
- Marketplace application (1-800-318-2596) – If you do not qualify for Medicaid or CHIP coverage
Food
- SNAP (Food stamps) application
- St. Louis Area Foodbank – Find a food pantry near you
- Operation Food Search – Links to food pantries, healthy recipes, special resources for children, and more
- Meals on Wheels – Hot meal delivery, for people who are elderly, disabled, or recovering from illness
- Mom’s Meals – Hot meal delivery, covered by Medicaid and Medicare Advantage plans that offer a paid meal benefit
Housing
- ARPA Mortgage assistance
- United Way 2-1-1 – Call, text, or chat
Utility bills
Clothing (including work attire)
Caregiving of children
- St. Louis Area Diaper Bank
- St. Louis Crisis Nursery – Short-term 24/7 emergency childcare
General wellness
- Gateway Region YMCA
- Silver Sneakers program – Free gym access to many people 65 years and older
- The Collective STL – Yoga and wellness classes and community to affirm Black lives
These local research studies are enrolling participants:
- RECOVER-AUTONOMIC: Testing a medication (Ivabradine) to improve POTS symptoms like fast heart rate, dizziness, and fatigue from Long COVID
- Long COVID study for brain fog: Testing a medication (fluvoxamine) to improve brain fog symptoms
- Smell Distortion: Testing an office-based procedure to improve sense of smell
- Community “pulse check”: Complete a survey about your Long COVID symptoms and needs to help shape resource development. Contact [email protected] for more information.
For fatigue and “energy crashes”
- 10 Energy saving tips
- Identifying triggers for “crashes” and post-exertional malaise (PEM)
- ME/CFS Crash Survival guide
For autonomic dysfunction (including dizziness when standing, and other symptoms)
*These handouts are not meant to replace advice from a doctor. Please talk to your doctor about any concerns or questions related to your personal treatment plan.
For Clinicians
Affinia Healthcare Long COVID clinic
Consultation service for the diagnostic workup and management for patients with suspected Long COVID
- Referral should include the following medical records, as available:
- History of present illness, including symptoms attributed to Long COVID
- Any diagnostic work-up already performed, including labs and imaging
- Documentation of COVID infection at least 3 months prior (either by laboratory evidence or clinical suspicion)
- Appointment format: Individual, in-person for initial visit; in-person or virtual for follow-up
Referral instructions
- Referrals from Affinia primary care teams:
- In NextGen EMR, please message Catherine Moore directly with all referral information as above, AND/OR schedule directly into the “Long COVID” schedule (currently the 3rd Wednesday morning of each month)
- Referrals from outside the Affinia network:
- Referrals from outside the Affinia network are limited to exceptions.
- Have the patient call 314-814-8700 to request a new PCP appointment with Dr. Catherine Moore (at Affinia’s 4414 North Florissant location). Here, the patient will have an initial visit and be assessed for eligibility, and then they will subsequently be scheduled for a Long COVID intake appointment.
- Please fax the patient’s face sheet/demographics and relevant medical records with all referral information as above to 314-898-1688, “Attn: Long COVID Clinic.”
- Most forms of insurance are accepted. There is a sliding scale fee available for those without insurance.
Washington University Long COVID clinic
Consultation service for the diagnostic workup and subspecialty treatment referrals for patients with suspected Long COVID
- Referral from a primary care provider should include the following medical records:
- History of present illness, including symptoms attributed to Long COVID
- Any diagnostic work-up already performed, including labs and imaging
- Documentation of COVID infection at least 3 months prior (either by laboratory evidence or clinical suspicion)
- Appointment format options: Individual, in-person or virtual
Referral instructions
- Referrals from WU-affiliated providers:
- In Epic, order “Amb referral to Infectious Disease”
- To provider: “Sarah Alleman,” “Gayathri Krishnan,” or “Michael J Hendrix”
- Comments: “Long COVID,” and list the major symptoms requiring evaluation (e.g., fatigue, brain fog, diarrhea, skin rash, fever, etc.)
- Referrals from outside the WU network:
- Fax the patient’s face sheet and relevant office notes (including SARS-CoV-2 test result and/or documentation of rationale for suspected Long COVID diagnosis) to 855-202-2372.
- Call 314-273-3300 with questions.
Washington University Occupational Therapy
Individualized one-on-one treatments focused on activity planning and modification, stress management and energy conservation, mental fatigue reduction, and mindfulness strategies
- Appointment format: Individual, in-person (including home therapy)
Referral instructions
- Referrals from WU-affiliated providers:
- If return-to-work is a primary concern, patient needs to be seen in the home setting, and/or no physical or speech therapy is needed:
- In Epic, order “Amb referral to Occupational Therapy”
- Class: “Internal Referral”
- To loc/pos: “WUSM OT 4444”
- To dept: “WU OT 4444FP”
- If physical and/or speech therapy referrals are also being placed:
- In Epic, order “Amb referral to WUSM 4240 DUNCAN PT, OT, SLP”
- PT, OT, and SLP orders will auto-populate. De-select services that aren’t needed.
- If return-to-work is a primary concern, patient needs to be seen in the home setting, and/or no physical or speech therapy is needed:
- Referral from outside the WU network:
- If return-to-work is a primary concern, patient needs to be seen in the home setting, and/or no physical or speech therapy is needed:
- Fax completed referral form and any relevant medical documentation to 314-289-6131.
- Call 314-286-1669 or e-mail [email protected] with questions.
- If physical and/or speech therapy referrals are also being placed:
- Fax the referral for the needed services to 314-286-1473.
- Call 314-286-1940 with questions.
- If return-to-work is a primary concern, patient needs to be seen in the home setting, and/or no physical or speech therapy is needed:
Washington University Physical Therapy
Individualized one-on-one treatments focused on decreased activity tolerance, fatigue, dizziness, and other mobility impairments
- Appointment format: Individual, in-person
Referral instructions
- Referrals from WU-affiliated providers:
- In Epic, order “Amb referral to WUSM 4240 DUNCAN PT, OT, SLP”
- PT, OT, and SLP orders will auto-populate. De-select any services that aren’t needed.
- Referral from outside the WU network:
- Fax the referral for the needed services to 314-286-1473.
- Call 314-286-1940 with questions.
Washington University Speech Therapy
Individualized one-on-one treatments focused on brain fog / cognitive dysfunction and mental fatigue
- Appointment format: Individual, in-person
Referral instructions
- Referrals from WU-affiliated providers:
- In Epic, order “Amb referral to WUSM 4240 DUNCAN PT, OT, SLP”
- PT, OT, and SLP orders will auto-populate. De-select any services that aren’t needed.
- Referral from outside the WU network:
- Fax the referral for the needed services to 314-286-1473.
- Call 314-286-1940 with questions.
Washington University Living Well Center
- Behavioral health counseling for Long COVID (financial assistance may be available)
- Education in lifestyle strategies to manage and improve Long COVID symptoms
- Does not include diagnostic workup or further testing for Long COVID
- Appointment format options: Group and individual, in-person and virtual
- Group (Shared Medical) Appointments for physical, occupational & speech therapy principles
- Covered by Medicaid and other insurers as a routine office visit
- (Coming Summer 2024)
Referral instructions
- Referrals from WU-affiliated providers:
- In Epic, order “Amb referral to Living Well Center”
- Purpose for referral: “Provider consult” if unsure or if multiple services requested.
- To provider: “Sara Kellahan” or leave blank
- Referral from outside the WU network:
- Fax the patient’s face sheet and relevant office notes to 314-996-8132.
- Call 314-514-3565 with questions.
Need a paper copy?
- Click here to view and download referral processes as a PDF
- Contact us to recommend additions or updates to this roster, or to request notifications when major updates in evidence and/or resources are released
Diagnostic tools
- Long COVID diagnostic & key features
- More tools coming in late 2024!
Management tools
- One-page, symptom-based management guides
- Anosmia and Dysgeusia
- Autonomic Nervous System Dysregulation
- Chest Pain
- Cognitive Impairment
- Cough
- Dyspnea
- Fatigue and Activity Intolerance
- Headaches
- Mental Health (Anxiety, Depression, PTSD)
- Other Potential Conditions: Cardiometabolic and Autoimmune
- Reference: U.S. Department of Veterans Affairs. “Whole Health System Approach to Long COVID: Patient-Aligned Care Team (PACT) Guide.” August 1, 2022.
- Detailed, symptom-based management protocols/guides
- State of the evidence for pharmacologic management
- 2023 Summary of candidate treatments and supporting evidence
- Evidence is evolving for use of these and other medications for Long COVID. These medications may not be right for everyone. This information is provided to help clinicians assess whether any of these medications may be appropriate for each patient’s individual situation.
Prevention of Long COVID
| Medication | Key references | Summary | Notes |
|---|---|---|---|
| COVID-19 vaccination | Tsampasian 2023 Brannock 2023 | Prior COVID vaccination consistently lowered the risk of developing Long COVID (OR 0.57 after two vaccine doses). | Conclusions drawn from multiple large observational studies and meta-analyses. |
| Metformin | Bramante 2023* | When taken during acute COVID infection, metformin reduced Long COVID incidence by 41%, with absolute risk reduction of 4.1%. | Metformin dosing protocol: Day 1: 500 mg x1 Days 2-5: 500 mg bid Days 6-14: 500mg qAM, 1,000 mg qPM |
| Antivirals | Ioannou 2023 Fung 2023 | When taken during acute COVID infection, Paxlovid reduced the incidence of thromboembolic events (VTE/PE) 1-6 months after treatment (SHR 0.65). When taken during acute COVID infection, the incidence of Long COVID symptoms 4-12 weeks later was reduced by 2.7% with nirmatrelvir and by 0.8% with molnupiravir. | Ioannou: Retrospective matched study of 9,593 non-hospitalized veterans at risk of severe disease. Fung: Observational administrative database study of 1.6 million adults 65 years and older. |
| Fluvoxamine | Bramante 2023* | No evidence of benefit. | *Multi-center randomized trial. Included 1,126 adults 30-85 years old with BMI ≥ 25 kg/m2, COVID-19 symptoms < 7 days, and positive PCR or antigen test within 3 days. |
| Ivermectin | Bramante 2023* | No evidence of benefit. |
Treatment of Long COVID
| Medication | Key references | Summary | Notes |
|---|---|---|---|
| Low-dose naltrexone (LDN) | O’Kelly 2022 Bonilla 2023 | LDN may improve symptoms of Long COVID related fatigue, post-exertional malaise, brain fog, and sleep difficulty. Side effects may include GI upset or fatigue. | Sample LDN dosing protocol: Month 1: 1 mg daily Month 2+: 2 mg daily (Dosing can range from 0.5-6 mg daily) Contraindications:Current or recent opioid use. Consider monitoring for hepatotoxicity. Bonilla: Retrospective observational study of 59 patients who received LDN, with no matched control cohort. O’Kelly: Prospective observational pre-post study of 52 patients to observe safety and efficacy. |
| L-arginine | Tosato 2022 | L-arginine + vitamin C may increase walking performance, muscle strength, endothelial function, and fatigue in adults with Long COVID. | L-arginine dosing protocol: 1.66g L-arginine + 500 mg vitamin C bid x 28 days L-arginine can also be found in high-protein foods like fish, eggs, and lentils. Randomized trial of 50 adults 20-60 years old with Long COVID related fatigue. |
- Supporting patients who apply for disability
- Document Long COVID symptoms, signs, and related impairments (especially as they affect the patient’s ability to perform their typical work duties)
- Consider using validated measures to document symptom severity over time
- SSA’s guidance on “What We Need from [Clinicians]“
- Common misconceptions exist. But, the facts are:
- Clinicians do NOT make the determination of disability
- Clinicians do NOT submit disability paperwork – they just fill out one part of the application
- Receiving SSDI can actually make it EASIER for a patient to successfully return to work
- Patients can be referred to the St. Louis Long COVID Initiative for help with the disability application process
- Note templates & ICD-10 coding instructions:
- Suggested ICD-10 codes and symptom-based “Plan” templates for Long COVID related:
- Fatigue
- Cognitive symptoms
- Breathing discomfort
- Cardiovascular symptoms
- Chronic anosmia
- Reference: AAPM&R Multi-Disciplinary PASC Collaborative Clinician Note Templates.
- Suggested ICD-10 codes and symptom-based “Plan” templates for Long COVID related:
- American Academy of Physical Medicine and Rehabilitation (AAPM&R): Symptom-based Long COVID guidance statements
- National monthly Long COVID ECHO webinar series (All prior sessions recorded)
- RECOVER COVID Initiative: Summaries of the newest Long COVID research
- American Medical Association (AMA): Long COVID news updates
Do you know about other Long COVID resources to share?
Or have you had trouble accessing resources on this site?
We want to hear from you!
Links to resources and clinics are for informational purposes and do not imply endorsement by the St. Louis Integrated Health Network or our partners, nor discrimination against similar resources or organizations not mentioned.
Last Updated: July 3, 2024
Supported by Grant U18HS029911