Long COVID Resource Center

The SARS-CoV-2 virus that triggers long COVID

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 corp

Survivor Corps has a map of Long COVID treatment centers on its website

TREATMENT

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.

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:

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

Getting Disability

Resources

Blogs

Webinars

RESEARCH

Opportunities

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.

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.
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