Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating illness that affects millions of people worldwide. However, persistent myths and misunderstandings hinder its recognition and treatment.
Solve is a proud co-founder of the World ME Alliance, and in the lead-up to World ME Day on May 12th, we’re shedding light on pervasive myths surrounding ME and revealing the facts that challenge them.
Join us as we debunk these misconceptions and amplify the voices of those living with ME.
1. Myth: ME is a mental health condition.
Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system.
It often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden.
2. Myth: ME is just about feeling tired
Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.
This can trigger a “crash” lasting for days or longer, making even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration.
For those with severe ME, even minimal exertion—such as sitting up, light conversation, or sensory stimuli like sound and light—can be intolerable, leaving them extremely disabled and dependent on full-time care.
3. Myth: You can exercise your way to recovery from ME.
Fact: Exercise can be dangerous for people with ME.
Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far.
In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves—balancing activity and rest—to avoid deterioration.
4. Myth: Only certain groups of people can develop ME.
Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds.
The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness.
5. Myth: Long COVID is entirely different from ME.
Fact: Many Long COVID patients have symptoms that match ME.
Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience PEM, the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.
6. Myth: Doctors cannot help people with ME.
Fact: Doctors can help people manage ME symptoms.
While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM. Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.
Raise awareness by sharing this helpful one-page poster outlining the myths and facts about ME/CFS and create your own graphic using this custom poster maker.
Follow this link for a roundup of some of the events and campaigns happening this World ME Day.
