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Living with Long COVID
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By
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Nenia Ballard
I've been a Long Hauler now for almost 4 years. Here you'll find everything I've gathered over the years to help me navigate my disability!
Sections
9
 
Resources
 
Articles
 
Work / Disability
 
Management / Pacing
 
Doctors
 
Videos

Resources

Resources and communities for Long Haulers and their supporters.

 
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This is a great resource for ME and Long COVID
Solve ME/CFS Initiative
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The Longhauler Advocacy Program is a great source of information
Home | C19LAP | COVID-19 Longhauler Advocacy Project
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The most recent CDC resource as of February '25
Living with Long COVID
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This is a government website, so who knows how long it will still be up!
Long COVID.gov
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Resources for Families dealing with Long COVID.
Long Covid Families
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A great community for people suffering from all sorts of chronic illnesses.
The Mighty. Making health about people.
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A resource site with private communities to join
Long COVID & ME: Understanding the Connection
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A collective resource for Long haulers
Long-COVID Alliance
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A resource searching for a cure.
RECOVER COVID Initiative
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Resource sheets for survival
Long COVID Essentials
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I am not a doctor and what does or doesn't work for me might not be what you should try. But here is a list of things this website recommends…
Supplements & over-the-counter treatments that may help with Long COVID
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A guide to dealing with hospitalization as a Long Hauler
When Long COVID sends you to the hospital
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Info Graphic explaining Long COVID.
Long covid: A guide for primary care
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A message from the coalition concerning diagnosis.
U.S. ME/CFS Clinician Coalition
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The complete document prepared by the DHHS
Services and Supports for Longer-Term Impacts of COVID-19
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A European charity, but it seems like a lot of the research is being done overseas…
Long Covid SOS Charity | Recognition Research Rehabilitation
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Articles

Keep up with the latest news on Long COVID

 
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NYT How COVID Affects the Heart
How Covid Affects the Heart (Published 2023)
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NYT Article About Long COVID
Scientists Offer a New Explanation for Long Covid (Published 2023)
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A great NYT’s article on Long COVIDs lasting effects
NYT: A Clearer Picture of Covid’s Lasting Effects on the Body
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Article on the study I was involved in!
NIH launches long COVID clinical trials through RECOVER Initiative,
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Discovering more in studies.
A discovery in the muscles of long COVID patients may explain exercise troubles
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People with hEDS may be more prone to Long COVID
People with hypermobility may be more prone to long Covid, study suggests
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Mayo Clinic Article on Long COVID
Long COVID questions and answers
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For when someone wants to argue that this isn't a real disease…
Long Covid Defined | NEJM
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An article from the WHO about Long COVID.
Post COVID-19 condition (long COVID)
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I'm in this article about Long COVID
The pandemic may have ended, but for these NH long COVID patients, the virus’ impact continues • New Hampshire Bulletin
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POTS on the rise after COVID
A condition called POTS rose after covid, but patients can’t find care
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Video about POTS and Long COVID
New Study Finds Link Between POTS And Long COVID
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Personally, I was managing my EDS until COVID changed my life forever.
Overlapping Symptoms: EDS and Long COVID
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Doubting yourself is hard when you don't have answers about the future
COVID-19 Long-Haulers and the Burden of Doubt
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Women are at a greater risk than men in developing long COVID
Study examines how a person’s sex impacts Long COVID risk
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Research connects ME and Long COVID, which is why that rest is so important to us!
Study finds COVID-19 increases risk of developing ME/CFS
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We need more studies targeting older adults with Long COVID
Researchers identify gaps in Long COVID research for older adults
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Looking for links to find a cure
Tissue pathology (autopsy) study makes unique contributions to Long COVID research
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An article about a woman who needs rest
Lying Down Anyhow: Disability and the Rebel Body
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Pacing is vital to daily success
Clinician’s Pacing and Management Guide for ME/CFS and Long COVID
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Work / Disability

Whether your working or can't work, there is a lot to deal with. Find everything related to accommodations and disability here. 

 
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Long COVID is a disability!
Long COVID as a Disability
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Guidance for getting work accommodations as a Longhauler
Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov
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A useful guide to help a manager understand what you're dealing with at work
Long Covid at Work: A Manager’s Guide
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An article specific to applying to disability with LC
Coronavirus (Covid-19) and disability: How to do it, with a disability specialist who has gone through it herself
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A blog all about SSD
How to Get On Blog
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A guide to applying for SSD
The Sleepy Girl Guide to Social Security Disability
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Tips for surviving while living on disability
How to Survive Financially While Applying for Disability
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Ways to apply for disability
25 Different Ways to Apply for Disability
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A blog post about living on Disability
Everything No One Ever Tells You About Living on Social Security Disability
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Workplace accommodations are necessary to continue working.
Approving Workplace Accommodations for Patients with Long Covid
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This information is from when Long COVID was originally added to Disability.
Long COVID and Social Security Disability
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A webinar on Long COVID and SSI
Webinar: Long COVID and SSDI
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Document EVERYTHING
A Lawyer’s Guide to Long COVID and Long Term Disability Insurance Claims
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Long COVID isn't specifically listed here, but many similar conditions (like ME and POTS) are which may help you get an idea for your needs.
JAN - Job Accommodation Network
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Kids with Long COVID are entitled to special support in school
Long COVID under Section 504 and the IDEA
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Management / Pacing

Pacing is the only way you can manage the fatigue! Learn how to do it with these guides.

 
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A symptom tracker.
LC Tracking Symptoms
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Pacing guide for Kiddos dealing with Long COVID
Pediatric Guide to Pacing
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The importance of REST!
Post Exertional Malaise (PEM) and Rest
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Pacing Guidance
Stop. Rest. Pace.
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A guide to tracking your symptoms
Tracking your symptoms
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Pacing is the only way to get through the day.
Pacing and Management Guides
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Doctors

Find Doctors, clinics, and therapists that specialize in Long COVID.

 
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How to get help!
Where to get help for Long COVID
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Find a Long COVID Care Center near you
Post COVID Care Centers List
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Long COVID Doctors
Long COVID Competent Providers List
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A list of mental health professionals who are Long COVID aware.
COVID-Conscious Therapist Directory
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A global directory
Find Your Clinician
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Dysautonomia Specialists
Dysautonomia International: Global Doctors
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Questions to ask when finding a doctor.
Finding a Doctor
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Talking to doctors about Long COVID can be hard. There are so many different symptoms and no two people present the same way!
How to talk to healthcare providers about Long COVID
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Medical Gaslighting is real!
Long covid and medical gaslighting: Dismissal, delayed ...
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A guide to help you find a therapist to deal with the mental strain of suddenly becoming disabled.
Finding and using mental health providers for Long COVID support
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Videos

Watch videos about all things Long COVID related.

 
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Video about Long COVID in kiddos
Long COVID In Children
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A video about life with Long COVID
Navigating Career & Life Transitions with Long-COVID: Dr. Julie Hill, Rehabilitation Counselor
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A collection of Long COVID videos
Long-COVID Webinars
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A playlist of long COVID videos for patients
Resources for Long-COVID patients
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Shocking…women are more at risk than men…
Sex Differences in Long COVID
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Educate yourself with Long COVID Webinars
Long COVID Webinars
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Videos about people living with Long COVID
Long Haul Voices: Official Trailer
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Monthly webinar aimed at educating providers.
iECHO | All Teach, All Learn
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A Podcast for those living with this disease
Long Covid Podcast
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Tech

Apps and Wearables that help track symptoms and manange pacing.

 
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I love Visible. It helps me manage my energy so much!
Visible - Activity tracking for illness, not fitness.
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Info on using tech for symptom monitoring
Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS & Long Covid
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Another app to help you manage your symptoms and pace yourself.
‎FUNCAP
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Books

Books about Long COVID and dealing with the disease

 
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An interesting read from a doctor who has been helping Long COVID patients since the start.
Clearing the Fog: From Surviving to Thriving with Long Covid ...
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A book about a struggle that seems to relate to that of a Long Hauler
The Lady's Handbook for Mysterious Illness
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A deep dive into disability
Well, This Sucks: Essays on Chronic Illness
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Awareness Products

Products to raise awareness about Long Haulers.

 
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This is so gorgeous!
Long Covid Awareness Bracelet
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I love this shirt. Its so simple and so cute!
Long COVID Awareness Rainbow Shirt
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Cute pins for raising awareness!
5 pack Long Covid Awareness Pins
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A UK shop, but they're raising money for research.
Shop | Long Covid Kids
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Cute items for spreading awareness
Long Covid Awareness Day Collection
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