What is M.E exactly?
Before I continue my blog, I thought it might be a good idea to share the basics of M.E.
What is M.E.?
M.E. is short for Myalgic Encephalomyelitis. It is also often called Chronic Fatigue Syndrome, or CFS for short. Very often people use the term ME/CFS.
The term “Chronic Fatigue Syndrome” is widely disliked within the M.E. community because it does not capture the gravity of the disease. It makes it sound like patients are simply tired all the time, when the reality is so much more severe.
M.E. is a serious and long-term neurological illness that affects multiple systems in the body — including the immune system, nervous system, and energy production.
It is far more than simply “being tired.” People with M.E. experience a profound loss of physical and mental energy that is not improved by rest.
One of the hallmark symptoms is something called post-exertional malaise (PEM), where even small amounts of activity — physical, mental, or emotional — can cause a significant worsening of symptoms, sometimes for days, weeks, or even longer.
Symptoms can include severe exhaustion, pain, cognitive difficulties (“brain fog”), sleep problems, dizziness, sensory sensitivities, and problems with standing or regulating heart rate and blood pressure. In severe cases, people can become housebound or bedbound and unable to tolerate light, sound, or even conversation.
M.E. can affect anyone, including children. Although some people improve over time, many live with the illness for years or decades. Despite its severity, it is still widely misunderstood and under-researched.
This is also one of the reasons why people with M.E. often take years to receive a diagnosis. Because the symptoms affect so many different systems in the body, doctors and specialists frequently do not know what to do with patients. And because tests often come back “normal,” patients are too often told that it is “all in their head,” or that they simply need to exercise more.
Many are sent away without any real support — or worse, pushed into treatments like graded exercise therapy that can actually worsen the illness.
This kind of medical gaslighting can go on for years before patients finally find a knowledgeable specialist who can properly diagnose the disease and help them learn how to manage life with it.
What is pacing?
Pacing is one of the most important ways people with M.E. try to manage their illness and avoid crashes.
A simple way to understand pacing is through something called the “spoon theory.”
Imagine that every person starts the day with a certain number of spoons, and each spoon represents a small amount of energy. Healthy people usually have so many spoons that they do not have to think about using them.
But for someone with M.E., the number of spoons is very limited — and once they are gone, there is no backup supply.
Things like showering, cooking, answering messages, concentrating, socializing, or even sitting upright all cost spoons. If someone with M.E. uses more spoons than their body can handle, it can trigger post-exertional malaise (PEM) — a worsening of symptoms that can last for days, weeks, or longer.
Pacing means carefully managing those spoons by:
spreading activities out,
resting before symptoms become severe,
stopping before hitting the limit,
and prioritizing what truly matters.
It is not about laziness or “giving in.” It is about trying to stay within the body’s very small energy envelope in order to prevent making the illness worse.
I hope that by now you are starting to understand just how complex M.E. is, and how difficult life with this disease can be in so many different ways.
Through this blog, I hope to share more about my life with M.E. and other chronic illnesses, and everything that comes with them — the struggles, the realities, but also the small moments of joy and hope along the way.
Most of all, I hope this blog can help raise awareness for a devastating disease that is still so often misunderstood.
