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This page is a developing resource and more updates are on the way.
Webinars
View webinars here.
Support Groups
View our list of local, national, and international groups for people living with Long COVID and associated diseases, caregivers, family members, friends, and more.
For Journalists
Resource List for Journalists Covering Long COVID, Disability, and Complex Chronic Illnesses.
Guides & Toolkits
Practicing Inclusion in the time of COVID
A brief guide for gatherings and call for disability solidarity, created by our parent organization Strategies for High Impact in partnership with What Would an HIV Doula Do? Available in English and Spanish, or share via social media: Instagram, Twitter. Have a story to share about using this guide with your group? Write us at [email protected]!
Organizing Toolkit to Keep Masks in Healthcare
This toolkit provides ideas for taking action and calling for mask requirements to continue in hospitals and other healthcare settings. Created by COVID Advocacy Initiative/Mandate Masks US and COVID Safe Campus with the support of Long COVID Justice and many other groups.
Prevention: Masks, vaccines, and more
- Don’t believe those who claim science proves masks don’t work
Dr. Lucky Tran in The Guardian - Masks During Pandemics Caused by Respiratory Pathogens—Evidence and Implications for Action
Journal of the American Medical Association (JAMA) - Doctors Should Not Infect Patients
World Health Network
Medical, self-care, and pacing resources
For people with a current COVID infection
- What to do if you have COVID
Guide from the People’s CDC
For people living with LCAD + their supporters
- Pacing Guide
Self-management strategies useful in chronic illnesses that include PEM (post-exertional malaise) – ME Action - Long Covid With ME
Resources on living with Long COVID and associated diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural tachycardia syndrome (POTS) - Resources for Patients
Patient-Led Research Collaborative - Lying Down Anyhow: Disability and the Rebel Body
Liz Crow
Prevention
The goal is to use layers of protection to prevent infection or reinfection.
MASKS WORK!
- Masking guides
- People’s CDC guide to masks
- DIY Fit testing your mask
- Mask Donations + discounts:
- Bona Fide Masks – Nonprofits seeking donations contact [email protected]
- Project N95 – Now closed but has lots of mask-buying resources
- Find or create a local Mask Bloc!
- Articles + studies on mask effectiveness
- Masks Work. Distorting Science to Dispute the Evidence Doesn’t – Scientific American
- Don’t believe those who claim science proves masks don’t work – Dr. Lucky Tran in The Guardian
- Why One-Way Masking Isn’t a Very Good Public Health Solution by reporter Abdullah Shihipar, MPH
- Masks During Pandemics Caused by Respiratory Pathogens—Evidence and Implications for Action – Journal of the American Medical Association (JAMA)
TESTS
- Understanding types of tests
- Find low cost + free tests near you
- Free telehealth care and treatment for COVID-19 & Flu for those who are eligible, via Test2Treat
- At-home molecular tests
- Free rapid tests: The federal government will send you 8 free COVID rapid tests: covid.gov/tests. Uninsured people may also be able to get free PCR tests, which are more accurate, from Quest Lab sites, by registering online and making appointments.
VACCINES
- Use vaccines.gov to find providers that offer free COVID-19 vaccines through the Bridge Access Program.
- If you do not want to get an mRNA vaccine (Moderna or Pfizer) or had bad side effects, consider the Novavax vaccine. It is less widely available, though it is available at Costco (to non-Costco members!), Rite Aid, Publix and CVS and other places.
OTHER COVID PREVENTION TOOLS
- Nasal sprays and mouthwashes: Some have ingredients that may protect against COVID, reducing rates of getting it or making it less harmful if you do get it. There is very little data on these agents but some are choosing to use them in addition to masks and other protective measures. We are looking for more info/data and will update when possible.
- Clean Air Club IG post with sources
- Air purifiers: There are several tools for choosing one for your space, though some are complex! Let us know if you have a favorite resource.
- Portable Air Cleaner (HEPA filter) buying guide via Clean Air Crew
- Scientists’ air purifier spreadsheet via Clean Air Crew
- Mini handheld air purifier (DIY and commercial versions)
- DIY air filters aka Corsi-Rosenthal boxes:
- How To guide & info via Clean Air Crew
- Illustrated guide on making DIY air purifiers
COVID-SAFER GATHERINGS + EVENTS
- People’s CDC, Clean Air Club and Strategies for High Impact / /What Would an HIV Doula Do have guides for COVID-safer events
- Examples of COVID-safer event policies + protocols:
- COVID-19 Access Practices from Nash Mask4MaskQueers
- Covid protocol from SONG (Southerners on New Ground)’s Queer South Homecoming retreat
- 2023 Brooklyn Art Book Fair
- Crowdfunding IG post where we asked for workplace examples, more are needed!
LCAD + HIV
Long COVID may be 4 times more likely in people living with HIV. Check out our HIV & Long COVID webpage for resources and info.
Long COVID is a Trans Issue
Webinar recording, slides, and resource list can be found here.
For clinicians + medical providers
Share these with your providers – or if you’re a provider, share with your colleagues.
- Resources for Clinicians
Patient-Led Research Collaborative - Clinician’s Pacing and Management Guide for ME/CFS and Long COVID
Fully referenced guide with information on diagnostic coding, documenting ME/CFS and Long COVID and other issues relevant to medical providers. Created by Patient-Led Research Collaborative in collaboration with #MEAction. - Long covid: A guide for primary care
Peer reviewed article, infographic and more, from BMJ. - ME/CFS Clinicians Coalition
Info for clinicians on treating patients with ME/CFS, understanding PEM, etc. - Post-Viral Syndrome & ME/CFS: What Every Clinician Needs To Know
ME Action - Resources re: ME/CFS for Long COVID clinics (for providers)
Massachusetts CFIDS/ME & FM Association - Long COVID – Medical education resources
Long COVID Justice NYC - Resources re: ME/CFS for Long COVID Clinics (for providers)
Massachusetts ME/CFS & FM Association - ER and Urgent Care considerations for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
- Serie de Videos del COVID Persistente
Long COVID Physio - Outpatient Management of COVID-19: Rapid Evidence Review
American Family Physician - Approving Workplace Accommodations for Patients with Long Covid — Advice for Clinicians
New England Journal of Medicine - Submaximal Exercise Provokes Increased Activation of the Anterior Default Mode Network During the Resting State as a Biomarker of Postexertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Journal article has been used by doctors to support disability claims (Evidence that ME/CFS has measurable effects including physical effects)
For researchers
- Resources for Long COVID researchers
Patient-Led Research Collaborative
Disability Resources
LCAD & Disability
- How to Get On
Self-advocacy guides for applying to disability, housing, and more. - Long COVID and Social Security Disability
Massachusetts ME/CFS & FM Association - Guidance on “Long COVID” as a Disability Under the ADA
Dept of Health & Human Services - How to make ADA requests for accommodations while receiving medical care during a pandemic
Vermont Center for Independent Living - COVID-19 Disability Resources
American Civil Liberties Union (ACLU) - How ACL’s Disability and Aging Networks Can Help People with Long COVID
Dept of Health & Human Services - Services and Supports for Longer-Term Impacts of COVID-19
Dept of Health & Human Services
Other resources
- People’s CDC
- Disability Justice – resources + readings
- Disability Justice – a working draft by Patty Berne | Sins Invalid
- Principles of Health Justice | Health Justice Commons
- The Cranky Queer Guide to Chronic Illness
Additional resources coming soon.