Long Covid & ME

Understanding the connection

When the SARS-CoV-2 pandemic began, disability advocates sounded the alarm: acute viral infection leads to chronic illness in a significant number of individuals. Dr. Fauci repeatedly warned of the risk patients would develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Like many other neurological diseases, up to 80% of cases of ME/CFS are initiated by infection.  Several preliminary studies are now showing that nearly half of people with Long COVID have ME/CFS. 

Post-viral disease is nothing new. Yet despite its high prevalence and severity, research and clinical care into ME/CFS lags behind the times. Our goal is to ensure that everyone can easily access the information they need to make the best possible decisions for the health of their families, patients, and for their own well-being.

Our Active Campaigns


#MEAction's Pacing campaign

Nearly half of people with Long COVID meet the diagnostic criteria for ME/CFS at 6 months, and nearly 90% report the cardinal symptom of ME/CFS: post-exertional malaise.

Mobilize with #MEAction to help people with Long COVID get the best possible guidance from the start. We know the harm that has been done to the ME community. Now, let us use our voices to protect others.

#MEAction Pacing Guide

The #MEAction Pacing Guide is an introduction for patients and healthcare providers to the best activity management strategy for people who experience post-exertional malaise: pacing. Available in English, Italian, and Swedish.

#MEAction Pacing Guide

Click below to access the landing page for our Pacing Guides.
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#MEAction's CME Course

#MEAction NY's Continuing Medical Education course, Post-viral Syndrome and ME/CFS: what every clinician needs to know, provides insight into ME in the context of SARS-CoV-2. Healthcare providers need continuing medical education to keep their licenses current; share the link with your local doctors and hospital systems.

Access & share the CME

Click to access the homepage for the #MEAction NY CME on ME/CFS and Long COVID.
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You help make great resources happen! 

If you find value in our #StopRestPace campaign, our Pacing Guide, or our Continuing Medical Education courses, please consider making a donation.

Further resources

Other Recommended Resources for Long COVID

Patient-Led Research Collaborative (PLRC) published their findings on demographics and symptoms of Long COVID in The Lancet

Read Fiona Lowenstein’s in-depth article on workplace accommodations to help companies retain employees with Long COVID and other chronic illnesses.

Body Politic’s Resources for Providers, including their Community Support for Long COVID page.

The National Network for Long COVID Justice, of which #MEAction is a Strategy Circle Partner, asks you to join us in a pledge for disability justice. We must end practices and policies that further marginalize, disabled and chronically ill people.

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