ME and Long COVID

We can’t talk about Long COVID without talking about ME.

ME is Myalgic Encephalomyelitis and studies show it may affect 50% of people with Long COVID.

What is ME? Resource sheet

Our Long COVID Essentials series includes several sheets related to ME, including:

Visit the Long COVID Essentials homepage for additional resources. This series have been reviewed by leading medical experts and are useful for patients, caregivers, and medical providers. Spanish translations are currently being produced.

ME: The Basics

  • A complex chronic disease, with many different symptoms that can come and go and/or be ongoing.
  • Most ME cases begin after an infection, though genetics and life experiences may also play a role. 
  • Can range from mild to very severe.
  • Can include five different kinds of fatigue: Post-Exertional, Wired/Tired, Brain Fog, Lack of Energy, and Flu-Like Fatigue.
  • Cardinal symptom is Post-Exertional Malaise (PEM): a flare-up of symptoms happens after even minor physical, emotional or mental effort. Symptoms typically worsen 12-48 hours after activity, and can last for days or even weeks. 
  • People with ME experience a substantial loss of physical and/or cognitive function.
  • ME is sometimes conflated with chronic fatigue syndrome (CFS). ME is a more specific term for the disease characterized by PEM, while CFS can refer to a less specific set of signs and symptoms that may not include PEM.
Graphic with title: "PEM: It's more than being tired." Below this is a pie chart labeled "Dimensions of post-exertional malaise." The pie chart has 5 different sections, which are labeled: "Physically drained or sick after mild activity. Mentally tired after the slightest effort. Dead, heavy feeling after starting to exercise. Next day soreness after non-strenuous, everyday activities. Minimum exercise makes you physically tired." Below this text says, "Source: DSQ-PEM, 2018. ME-pedia.org"
Pie chart showing 5 dimensions of post-exertional malaise.

ME: The Numbers

  • 75% of people with ME are unable to work.
  • 25% are homebound / bedridden.
  • 15-30 million people worldwide are living w/ ME.
  • 80-90% of cases are undiagnosed.
  • 75-85% of cases are in people assigned female at birth.
  • The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.
  • Someone with mild ME may be able to work full-time with accommodations; someone with very severe ME may be bedbound and have trouble communicating.

    Source: ME Action, learn more at www.meaction.net/learn/what-is-me

Common ME Symptoms

In addition to PEM, other common symptoms include:

  • Unrefreshing sleep
  • Orthostatic intolerance (symptoms occur when standing up, but clear up when sitting or lying down)
  • Pain in the muscles and joints
  • Headaches of a new type, pattern, or severity
  • Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
  • Sensitivity to light, sound, taste, odor, or touch
  • Gastrointestinal symptoms (nausea, pain, etc)
  • Effects on muscles: fatigue, weakness, twitching; poor coordination, loss of control (ataxia)
  • Autonomic and endocrine symptoms (poor temperature regulation, cold or heat intolerance)
  • Immune symptoms (tender lymph nodes, sore throats, fevers, or flu-like symptoms; new food or chemical sensitivities)


Source: ME Action, learn more at www.meaction.net/learn/what-is-me

“Karla Monterroso, a Los Angeles-based consultant and former CEO who has long COVID from a March 2020 infection, said that symptoms like fatigue and exercise intolerance play into racist stereotypes. ‘The stereotypes people have about Black, Indigenous, and Latine people are the exact presentation of illness of long COVID,’ she said. ‘[That] you’re lazy, you don’t want to work hard, you’re unhealthy … post-exertional malaise, brain fog, all of those symptoms replicate those stereotypes.’ According to Monterroso, she encountered a racist cardiologist who said, ‘I know you want to be in bed. Laying down is nice. But you gotta get up and get that body moving, entiende?’ she recounted in ‘The Long COVID Survival Guide.”

From The Long COVID nightmare is far from over, especially for women of color by Laura Weiss in Prism Reports

Resources

Treatment and clinical guidance for patients & providers

Tips, support groups, advocacy

  • #MEACTION
    • MEAction organizes groups and campaigns, including: Facebook groups and monthly calls, organized by affinity, region, or relation to ME (patient, family, caregiver, and more.)
  • WORLD ME ALLIANCE
  • CANARY CORPS
    • MEAction‘s peer-run program to help people with ME, LC, and other infection-associated illnesses find & access local disability services and support. This is a new project currently under development.
  • ADDITIONAL GROUPS
    • Check out our Get Connected page for additional support and advocacy groups for ME, LC, and associated diseases.

Additional reading