Long COVID Resource Center

Long COVID is a complex condition that will likely encompass different types of disorders. This page focuses on long COVID conditions that are characterized by fatigue, post-exertional malaise (PEM), pain, sleep, and cognitive problems and that bear similarity to diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and postural orthostatic tachycardia syndrome (POTS)

Recognizing that the COVID-19 pandemic would likely lead to the appearance of ME/CFS-like conditions such as long COVID, Health Rising began focusing on long COVID in the first quarter of 2020 and has published about 20 blogs on it.

Organizations and Support Groups

• Survivor Corps -“one of the largest and fastest-growing grassroots movements connecting, supporting, educating, motivating and mobilizing COVID-19 Survivors to support all medical, scientific and academic research, to help stem the tide of this pandemic and assist in the national recovery.
• Body Politic – Grassroots health justice organization at the forefront of the patient-led #LongCovid movement.
• (20+) COVID-19 Long Haulers Support
• COVID-19 Long-Haulers Discussion Group
• C19 Recovery Awareness
• Coronavirus Survivor Corps

TREATMENT

• Post-COVID Care Centers — Survivor Corps – US Map contain long COVID treatment centers. States in green have them.
• C19 Recovery Awareness‘s list
• Check out what supplements/diets people with long COVID are finding improve their symptoms on https://longcoviddata.com/
• CDC: Evaluating and Caring for Patients with Post-COVID Conditions
• Updated Clinical Guidelines on ME/CFS may help people with long COVID. Dr. Lucinda Bateman notes, “There are many steps clinicians can take now to
  improve the health, function, and quality of life of people with ME/CFS, including those
  newly ill with ME/CFS following COVID-19. This guidance may also help Long COVID
  patients, even if they do not fully meet criteria for ME/CFS.”
• Check out long COVID treatment trials on clinicaltrial.gov

COPING

Health Rising provides support on coming to terms and coping with long COVID. We have blogs and pages on pacing, coping, how to maximize your doctor’s appointments, how to get better sleep, how to exercise, ways to help with pain, orthostatic intolerance, diets, how to get disability, how to get financial assistance.

• An Offering: ME/CFS Resources and Support for the COVID-19 Long Haulers
• Tips For Newbies – Health Rising used a community survey to find out what people with ME/CFS would have done differently to inform its “Tips for Newbies” blog

Health Rising has blogs on how to differentiate between depression and ME/CFS, and how to prove to your doctor that ME/CFS is a real and serious condition. If you meet the criteria for ME/CFS (you probably do if you’re reading this) check these out:

• How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) and are Not Just Depressed
• Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness.

Websites

• HowtoGetOn – How to have a great disabled life”. HowtoGetOn provides a wealth of information on federal, state, and local assistance programs and how to use them effectively.
• Administration for Community Living – long Covid webpage from the Dept of Health and Human Services with links to many programs that can help people with disabilities.

Pacing

• The Why, When and How of Pacing | Long Covid’s Most Important Lesson – YouTube
• Top-Energy-Saving-Tips.pdf (workwellfoundation.org)

GETTING DISABILITY 

Resources

• The Longhaulers-Legal-Resource-Center from Kantor and Kantor includes tips, articles, a guidebook, and a recording of a webinar where the panel answered more than 100 questions about disability insurance
• Disability Resources for Chronic Fatigue Syndrome, Fibromyalgia and now Long Covid
• Cort Johnson’s four-part series on Disability and Chronic Fatigue Syndrome (ME/CFS):  Disability I/ Getting the Diagnosis / Documenting Your Limitations /Resources
• HowtoGetOn – superb resource for people seeking to have “a great disabled life”. Includes advice on getting disability
• Federal Guidance for people with long COVID and Disability.
• Administration for Community Living’s Disability and Assistance Line (DIAL) – Federal agency that provides services for those living with or applying for disability. To use DIAL, call 888-677-1199 Monday-Friday from 9 a.m. to 8 p.m. (Eastern) or email DIAL@n4a.org.

Blogs

• 10 Tips for COVID-19 Long-Haulers Seeking Disability Benefits – Health Rising
• The Disability Defenders: The Workwell Foundation, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
• CPET Tests – The Gold Standard for Getting Disability 
• Scott Davis’ / Five Crucial Steps to Winning your Chronic Fatigue Syndrome (CFS) Disability Case (1999) / Winning Your Disability Case with the Help of Co-Workers, Family Members and Friends [Affadavits are Important] (2001) / Completing Disability Forms: Five Critical Tips to Keep in Mind for Chronic Fatigue Syndrome and Fibromyalgia Patients (2002)

Webinars

• Kantor and Kantor / Workwell Long COVID and ME/CFS (Aug 2021)
• How to Navigate Disability Insurance
• COVID-19 and Disability Claims and Appeals 

RESEARCH

Opportunities

• Recover – NIH website on long COVID. The NIH has received $1.15 billion to study long COVID.
• Comparison of ME/CFS and Long COVID-19 Patients – Full Text View – ClinicalTrials.gov

Long COVID Research Reviews

Check out some of the 20 blogs HR has produced on long COVID below… (and sign up to get the blog.) Plus, thanks to the Solve ME Initiative’s support Health Rising has begun a blog series that will review the latest long COVID research findings.

• Long COVID #1: Big Studies, an FM Connection, & Low Energy Brains…
• A COVID-19 Long-Hauler Case Report Points To ME/CFS, Autoimmunity – and IVIG Treatment
• RAS and Bradykinin: Where COVID-19 and ME/CFS Meet?

Connected: Long COVID and ME/CFS Research 

Just as it benefits people with ME/CFS to pay attention to long COVID research so it benefits people with long COVID to pay attention to ME/CFS and FM research.

Topics like neuroinflammation, limbic system activation, low energy production, metabolism, blood flows to the brain and muscles, microcirculation problems, the autonomic nervous and immune systems all seem likely to play a role in long COVID, and Health Rising has covered them extensively.

ADVOCACY

• The Long COVID Alliance – is a network of patient advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
• Survivor Corps -“one of the largest and fastest-growing grassroots movements connecting, supporting, educating, motivating and mobilizing COVID-19 Survivors to support all medical, scientific and academic research, to help stem the tide of this pandemic and assist in the national recovery.
• COVID-19 Longhauler Advocacy Project
• Body Politic – Grassroots health justice organization at the forefront of the patient-led #LongCovid movement.