Today is World Myalgic Encephalomyelitis (ME) Day, this year the focus is on raising awareness and improving understanding of post-exertional malaise (PEM), a symptom of this complex condition.
Marking the birth of Florence Nightingale, a historical figure who experienced ME-like symptoms. Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex neurological disease. The COVID-19 pandemic has brought ME/CFS and PEM into sharper focus. Many individuals with Long COVID have developed ME/CFS, highlighting the urgent need for treatment approaches that acknowledge PEM’s devastating impact.
PEM is one of the unique symptoms of ME/CFS that is often misunderstood. It is characterised by severe fatigue that can be exacerbated by any minor physical, mental or emotional exertion. Unlike ordinary fatigue, PEM is a profound, incapacitating exhaustion that can last for days or weeks after minimal exertion. Pushing through doesn’t bring improvement; instead, it can cause a worsening of symptoms, signifying the distinct character of ME/CFS.
“[I am] a doctor who has been bedridden with severe ME for a long period after [graded exercise therapy] GET caused a severe relapse from which I have not recovered” Dr Mark Vink, ME/CFS patient, clinician and researcher
PEM impacts all facets of life. Simple tasks can trigger a range of symptoms, including cognitive impairment, muscle pain, and light and noise sensitivity.
This symptom has far-reaching implications. Basic tasks like cooking, bathing, or even conversation can lead to a resurgence of symptoms, often referred to as a ‘crash’.
“I feel like I’m a broken battery that’s stuck at 10% and when we crash we disappear so you never see us at our worst” Jennifer Brea, US patient, Unrest documentary, 2017
Rehabilitation professionals, including physiotherapists, occupational therapists and speech and language therapists, play a critical role in managing ME/CFS. It’s about optimising function within an individual’s energy limitations, focusing on energy conservation, and avoiding triggering PEM. Tailored strategies might involve activity planning, pacing techniques, energy-saving devices, and coping mechanisms for anxiety and breathlessness.
“Fatigue is what we experience, but it is what a match is to an atomic bomb” Laura Hillenbrand, author of Seabiscuit and Unbroken, An Author Escapes From Chronic Fatigue Syndrome, NYT, 4 Feb, 2011
What you can do on World ME Day
World ME Day is an opportunity to raise awareness, dispel stigma, and learn from those living with ME/CFS. Find out more so you can be part of the change. Read more about ME/CFS on our Physiopedia page. As well as rehabilitation advice, you will learn more about the symptoms of ME/CFS, how it is diagnosed, and the treatments that are available.
Join in and be part of the goal to create a world without ME. Post on social media using the hashtags #LearnFromME and #WorldMEDay and let everyone know ME is the disease where pushing harder can make you sicker.