If you find these resources helpful, please join our Action Network email list for more info, resources, and action alerts!
Webinars
View webinars here.
Find Local Groups & Resources
Check out maps and lists of local and regional resources, and more.
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
Resist Mask Bans!
Check out our resource list here.
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.
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.
Medical, self-care, and pacing resources
For people with a current COVID infection
- What to do if you have COVID – Detailed guide from the People’s CDC
- What to do if you get COVID – Tips from a medical researcher and biology professor
- The Problem with Pulse Oximeters: A Long History of Racial Bias
Common advice for people with current COVID infection is to use a pulse oximeter to monitor the oxygen levels in your blood, but as this article explains: “for darker-skinned patients, oxygen saturation readings can read as normal when they are, in fact, dangerously low.”
For people living with LCAD + their supporters
- We can’t talk about Long COVID without talking about ME/CFS – our resource page
- Pacing Guide
Self-management strategies useful in chronic illnesses that include PEM (post-exertional malaise) – ME Action - 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: video + document
- How to mask with a beard
- Mask Donations + discounts:
- Bona Fide Masks – Nonprofits seeking donations can contact [email protected], learn more about their past donations on their socials.
- Project N95 – Now closed but has lots of mask-buying resources and info about different types of masks
- 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 – Peoples CDC
- Guide to Rapid Test Reliability – Clean Air Club
- Find low cost + free tests near you
- CVS and Walgreens offer a variety of tests, including PCR tests which are increasingly hard to find! Prices and availability may vary based on location, test type, insurance, etc.
- Fastlabtech.com will deliver PCR tests by mail (free with insurance, $325 without)
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 (membership not required), 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
- List of rebates for U.S. states- Most power companies in the U.S. provide $25-$75 rebates on air purifiers when you purchase through their marketplace or submit info to their rebate application.
- Find or create an air purifier lending library
- 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
- Portable Air Cleaner (HEPA filter) buying guide via Clean Air Crew
COVID-SAFER GATHERINGS + EVENTS
- Guides for COVID-safer events are available via:
- 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
- COVID-19 Policy and Protocols for In-Person Gathering (2024) – Castanea Fellowship
- Covid-19 and Climate Safety Practices for Western Massachusetts – Valley Disability Action
- 2023 Brooklyn Art Book Fair
- Crowdfunding IG post where we asked for workplace examples, more are needed!
ZINES!
Check them out online or print and distribute in your community:
– COVID-Safer Pride Guide from ACT UP NY
– What’s Up with COVID and How to Protect Yourself, 2024 edition from Hazel Newlevant
– Mask Up! We Need You – Palestinian Solidarity, COVID-19 and the Struggle for Liberation from Sheyam Ghieth and Rimona Eskayo
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
LCAC & 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 - Long COVID and SSDI – webinar (2024)
Pandemic Patients - Apply for legal help with your disability application, workers’ comp, etc
Pandemic Patients / Pandemic Legal - Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557
Dept of Health & Human Services - How to make ADA requests for accommodations while receiving medical care during a pandemic
Vermont Center for Independent Living - 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
- Sins Invalid Curriculum – including 10 Principles of Disability Justice | Sins Invalid
- 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.