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💙 ME/CFS Awareness Day 💙

tearstruck May 12th

💙 May 12th is International ME/CFS Awareness Day. 💙

Myalgic Encephalomyelitis (ME/CFS) is a very common and highly disabling neuro-immune condition. It has been recognised as neurological by the world health organisation since 1969. It frequently begins after an immune trigger such as an infection.

The defining characteristic of the condition is Post-Exertional Malaise, PEM, which is a severe worsening of symptoms, with potential for overall illness deterioration, in response to any exertion. The activity that triggers PEM varies based on severity: for someone with mild M.E., this can be exercise, work or schooling, whereas some people with extremely severe M.E. may not have capacity to tolerate light, sound, movement, speech, swallowing or digestion. A large proportion of people with the condition are housebound or bedbound. Many initially begin as mild and deteriorate due to illness progression, improper management, or pressure to fulfil responsibilities and continue pre-illness activity levels.

It is frequently reported to affect 17–24 million people worldwide, with higher recent estimates due to approximately one third of people with long covid developing ME/CFS.

Unfortunately due to a long history of psychologisation it is severely underfunded compared to disease burden, poorly understood by many medical professionals, and there are currently no approved effective treatments. Approx. 5–10% make a full recovery to pre illness activity levels.

Current research indicates an immune basis, with impaired immune cells, significant issues with cellular energy production in muscles and brain, and neuroinflammation. A large scale 2025 study called DecodeME indicated a likely genetic component to predisposition.

Common comorbidities include POTS and other forms of dysautonomia, migraines, MCAS, hypermobility conditions, chronic pain conditions, gastrointestinal issues and more.

Also known as chronic fatigue syndrome, an outdated name which fails to convey the severity of the condition, it is not the same as the symptom of chronic fatigue which is common in many conditions.

Awareness Day is May 12th, for Florence Nightingale's birthday, who was mostly bedbound at age 36 after the Crimean War with a condition now thought to have been ME/CFS.

💙 The awareness colour for ME/CFS is blue 💙