Long COVID Initiative

• 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
• Find Help – Find free or reduced-cost resources near your zip code anywhere in the USA

• 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
• 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 Services of Eastern Missouri – Free for people with low income and older adults
• Allsup

• 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

• Affinia Healthcare
• CareSTL Health
• Family Care Health Centers
• People’s Health Centers
• St. Louis County Department of Public Health
• St. Louis HELP – Borrow medical equipment for free
• Financial assistance for medical costs

• 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

• 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

• Social Security Administration (SSA) Disability information
• Guidance on Long COVID as a disability
• Patient guide to the SSA disability application process – by the University of Washington
• A peer’s step-by-step guide for how to apply for disability

• 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

• ARPA Mortgage assistance
• United Way 2-1-1 – Call, text, or chat

• Missouri LIHEAP Energy Assistance

• Urban League Clothes Closet

• FAQ for employees: Getting accommodations for work
• Sample letter to request accommodations at work, and example accommodations
• Missouri’s Disability Portal for COVID-19
• FAQ for employers: How to support employees with Long COVID

• St. Louis Area Diaper Bank
• St. Louis Crisis Nursery – Short-term 24/7 emergency childcare

• 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

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:
  1. 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:
  1. Referrals from outside the Affinia network are limited to exceptions.
  2. 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.
  3. 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.”
  4. Most forms of insurance are accepted. There is a sliding scale fee available for those without insurance.

Consultation service for the diagnostic workup and subspecialty treatment referrals for patients with suspected Long COVID

• Referral from a primary care or other provider should include the following medical records:
  • Progress note with history of present illness, including symptoms attributed to Long COVID
  • Any diagnostic work-up already performed, including labs and imaging
  • Rationale for suspected COVID infection at least 3 months prior (either by clinical suspicion or laboratory evidence)
  • Patient’s identifying/contact information, proof of insurance, and PCP name and contact information
• Appointment format options: Individual, in-person or virtual

Referral Instructions

• Referrals from WashU-affiliated providers:
  1. In Epic, order “Amb referral to Infectious Disease”
  2. 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:
  1. Fax the patient’s face sheet and relevant office notes to 888-869-4437 (see above for required documentation).
  2. Call 314-362-9098 with questions.

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:
  1. 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”
  2. 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.
• Referral from outside the WU network
  1. 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 OTClinical@wustl.edu with questions.
  2. 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.

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:
  1. In Epic, order “Amb referral to WUSM 4240 DUNCAN PT, OT, SLP”
  2. PT, OT, and SLP orders will auto-populate. De-select any services that aren’t needed.
• Referral from outside the WU network:
  1. Fax the referral for the needed services to 314-286-1473.
  2. Call 314-286-1940 with questions.

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:
  1. In Epic, order “Amb referral to WUSM 4240 DUNCAN PT, OT, SLP”
  2. PT, OT, and SLP orders will auto-populate. De-select any services that aren’t needed.
• Referral from outside the WU network:
  1. Fax the referral for the needed services to 314-286-1473.
  2. Call 314-286-1940 with questions.

• 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.
  • Covered by Medicaid and other insurers as a routine office visit

Referral Instructions

• Referrals from WU-affiliated providers:
  1. In Epic, order “Amb referral to Living Well Center”
  2. Purpose for referral: “Provider consult” if unsure or if multiple services requested.
  3. To provider: “Sara Kellahan” or leave blank
• Referral from outside the WU network:
  1. Fax the patient’s face sheet and relevant office notes to 314-996-8132.
  2. Call 314-514-3565 with questions.

• Medical evaluation for the diagnostic workup and treatment referrals for patients with suspected Long COVID
• Self-referrals accepted
• Visit clinic website or call 816-404-9520 with questions
• 2301 Holmes Street, Kansas City,  MO 64108

• Referral required – specify which therapy discipline(s)
• Visit clinic website or call 816-691-1795 with questions
• Two locations:
  • Creekwood Campus Physical Therapy & Sports Medicine
    5400 N Oak Trafficway, Suite 101, Kansas City, MO 64118
  • Main Campus 2nd Floor Pavilion
    2790 Clay Edward Dr. North Kansas City, MO 64116

• Referral required – specify which therapy discipline(s)
• Visit clinic website or call 573-884-4774 with questions
• Two locations:
  • Ellis Fischel Cancer Center
    1 Hospital Dr
    Columbia, MO 65212
  • Sam B Cook Healthplex
    1432 Southwest Blvd
    Jefferson City, MO 65109

• 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.

• Myalgic encephalomyelitis / Chronic fatigue syndrome (MECFS) – From the Bateman Horne Center
• Titrated return to individualized activity
• Smell training

• 2023 Summary of candidate treatments and supporting evidence

Prevention of Long COVID

• 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.

• Use these tips to efficiently document Long COVID symptoms, signs, and related impairments that 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

• 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.

• The following instructions can be added to therapy referrals as guidance for treating therapists.
  
  
• Physical Therapy:
  • Diagnosis:
    • Long COVID (ICD-10: U09.9)
    • [Include relevant symptoms such as fatigue, post-exertional malaise (PEM), dysautonomia, etc.]
  • Treatment:
    • Pacing, PEM/PESE management, activity/exercise modification.
    • See guidance from World Physiotherapy: https://world.physio/sites/default/files/2021-07/Briefing-Paper-9-Long-Covid-FINAL-English-202107.pdf?logged_in=true
    • Consider use of World PT Day Long COVID handouts: https://world.physio/toolkit/world-pt-day-2021-information-sheets-english
      
      
• Occupational Therapy:
  • Diagnosis:
    • Long COVID (ICD-10: U09.9)
    • [Include relevant symptoms such as fatigue, post-exertional malaise (PEM), decreased activity tolerance, etc.]
  • Treatment:
    • Energy conservation strategies, ADL/IADL modifications.
    • See the Royal College of Occupational Therapists’ guide on Long COVID in adults: https://www.rcot.co.uk/sites/default/files/Long%20Covid%20adults%20guide.pdf
      
      
• Speech and Language Pathology:
  • Diagnosis:
    • Long COVID (ICD-10: U09.9)
    • [Include relevant symptoms such as cognitive impairment, cognitive communication deficit, attention and concentration deficit, etc.]
  • Treatment:
    • Cognition and communication strategies, breath support / breathing exercises