from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice
Myalgic encephalomyelitis
Myalgic encephalomyelitis (ME)*, is an umbrella term for a debilitating, multi-systemic disease often triggered by an infection. It can range in severity from mild to very severe and cause people to be home-bound or fully bed-bound. The disease is life-changing, even when mild.
According to the National Academies of Sciences, Engineering, and Medicine (NASEM), ME can also be triggered by exposure to environmental pollutants, immunization, physical trauma, and other events.
There currently is no cure for ME. Tens of millions of people around the world have the disease. Some studies show that around half of people with Long COVID meet the criteria for ME. Both Long COVID and ME are multi-systemic. This means they can affect every organ system and have many symptoms.
Post-exertional malaise
Post-exertional malaise (PEM), sometimes called post-exertional neuroimmune exhaustion (PENE) is a key feature of ME. PEM/PENE is a set of symptoms and signs showing “multisystem pathophysiology.” This means there are abnormal changes to many organ systems due to the disease.
- PEM/PENE means experiencing new or worsened symptoms after physical, emotional, or mental activity (even very mild activity). Some people describe it as a “crash” or “flare.” These symptoms can vary from person to person, much like the disease itself.
- While PEM/PENE involves profound, disabling fatigue, PEM/PENE is not just fatigue.
- New or worsened symptoms may include: fatigue, body pain, sleep problems, “brain fog,” muscle weakness, feeling “wired” and inability to rest effectively, and/or flu-like symptoms (sore throat, headache, nausea, dizziness).
- You might struggle with simple tasks more so than usual, and even be confined to bed afterwards. Recovery can take days, weeks, or longer.
Diagnosing ME
Common symptoms of ME include:
- Profound fatigue
- Unrefreshing sleep
- Cognitive impairment or trouble thinking, sometimes called “brain fog”
- Orthostatic intolerance, including rapid heart rate and dizziness while changing positions
- Pain
- Gastrointestinal (digestive) issues
- Sensory intolerances, such as distress from common sounds, lights or textures
- And more
According to NASEM, a person is typically diagnosed with ME if they have:
- Either cognitive impairment or orthostatic intolerance
- Much less ability to do activities that they could do easily before illness, lasting for over 6 months
- PEM/PENE and profound fatigue
- Unrefreshing sleep
Some people with ME and some medical experts prefer other definitions to diagnose the disease and recommend specific tests for PEM/PENE.
Managing symptoms
ME research has been underfunded and overlooked for decades. There are no cures, though there are some treatments that may help. There is also a stigma around the disease from many medical providers and society.
How the body makes and uses energy during exercise is abnormal in people with ME. The energy production problem of ME is not seen in people without ME who are out of shape (which is called “deconditioned”). While uninformed medical providers may suggest “graded exercise therapy” as a treatment for ME, it is not recommended by experts. Exercise often makes the disease more severe.
Some treatments and adaptions that might help people with ME:
- Pacing is very important to preserve your energy and trying to avoid PEM/PENE.
- Pacing means scheduling radical rest, foregoing activities, and setting limits.
- Some treatments may provide relief, but they don’t always work for everyone.
- ME can happen along with other diagnoses like dysautonomia, mast cell activation syndrome, and others. Diagnosing these conditions can lead to treatments that may help you better manage them and improve your quality of life.
Sometimes ME cases are severe. There are few treatments, coping mechanisms, or resources that improve the quality of life for severe ME. Read more in our resource on severe ME and Long COVID.
*ME is sometimes conflated with chronic fatigue syndrome (CFS). ME is a more specific term for the disease characterized by PEM/PENE, while chronic fatigue syndrome (CFS) can refer to a less specific set of signs and symptoms that may not include PEM/PENE. This can lead to uninformed providers prescribing harmful exercise therapies to people with PEM/PENE.
Resources
- Guidebook on ME/CFS — Bateman Horne Center
- Pacing guides for adults, for children, for clinicians — #MEAction
- ME support groups, including for caregivers — #MEAction
- Possible treatments for ME to share with a doctor — ME/CFS Clinician Coalition
- ME/CFS toolkit — U.S. Centers for Disease Control and Prevention (CDC)
- Guide to severe ME/CFS — Emily Collingridge
- Opposition to Graded Exercise Therapy (GET) for ME/CFS, Letter for Providers – Workwell Foundation
Writer: Miles Griffis • Editor: Betsy Ladyzhets • Medical reviewer: Dr. Todd Davenport
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Notes
- This series was published in fall 2024; some information may be subject to change.
- Although each topic has been reviewed by medical professionals, they are informational resources, not medical advice. Always talk to your medical providers before trying treatments or symptom management strategies.
- Each resource page offers brief information and is not comprehensive. We know there is much more information on each topic we cover, and that there are additional topics not yet addressed in this series.