Why I Insist on Calling It ME: The Truth Beyond Chronic Fatigue Syndrome
Why I Refuse to Call It CFS
I refuse to call it CFS (Chronic Fatigue Syndrome). From my perspective, ME (Myalgic encephalomyelitis) is not just chronic fatigue syndrome. It is so much more than that. The renaming of ME to CFS in the 1980s, while perhaps intended to make the illness more accessible to doctors or the public, inadvertently caused stigma. Chronic fatigue, as a term, trivialises the reality of this disease. Anyone can feel fatigued after a busy week, a sleepless night, or an intense workout. But ME is not that kind of tired. It is a full-body, mind-and-spirit exhaustion, pain, rigidity, spasms, brain fog, so much more than what words like fatigue or tiredness can convey.
I have both ME and CFS (I am happy to refer to it as ME and/or MECFS). That statement might surprise people because most healthcare professionals often lump the two together, or worse, reduce it all to CFS. Yet they are different. ME, my lived experience tells me that ME is a neurological, immunological, and sometimes metabolic condition. It touches every part of my life, from my ability to think to move, to regulate temperature, to even manage simple sensory input. CFS, in the way it is often used in medical circles, sounds like a milder version. It sounds manageable. It sounds like it could be fixed with sleep, exercise, or a better diet. And that couldn’t be further from the truth - infact it is dangerous.
I have been in the hospital several times, and even there, in the controlled environment of emergency care, the confusion happens. I once confirmed I have ME, and the A&E consultant asked if I meant CFS. I said yes, but clarified that I refuse to call it that because of the stigma. And they understood. They respected that. That moment was validating, because for once, the complexity of what I live with was acknowledged. It is not just chronic fatigue. It is ME. And the distinction matters, not just to me, but to all of us living with the condition.
I understand why many doctors default to CFS. Medical education, research, and guidelines often use the term CFS as a catch-all. It is easier, and perhaps safer, from a diagnostic standpoint. But as someone who lives with the consequences daily, I see the harm. When ME is dismissed as chronic fatigue syndrome, the public and even some healthcare providers can underestimate the severity, the flare-ups, the post-exertional malaise, and the cognitive impairment. I have had days when my body and mind feel so heavy and uncooperative that simple tasks like making a cup of tea or opening a window feel impossible. Calling that fatigue seems almost insulting, but certainly heartbreaking.
Using the term CFS also contributes to a lack of empathy. People hear "chronic fatigue" and think laziness (yuppie flu, as it was once devastatingly known as), lack of motivation, or just mental stress. They do not see the months or years of careful pacing, the constant monitoring of energy reserves, or the painful trade-offs between doing something and paying for it later with days or weeks of relapse. ME, in contrast, demands recognition of its seriousness. It demands understanding that this is not something to push through or manage with sheer willpower. It is something to respect, accommodate, and, above all, research more deeply.
I have tried to educate friends and family about the difference. Explaining that ME is a complex, multi-system disease, not just tiredness, is exhausting in itself. It can feel isolating, because even when people listen, the words rarely capture the depth of experience. Words matter. They shape perception, stigma, and ultimately, how society and the healthcare system respond to people like me.
There is also a historical aspect to this. Myalgic encephalomyelitis has a long history, recognised in outbreaks as far back as the 1950s and 1960s. The term CFS emerged in the 1980s in an attempt to classify patients presenting with prolonged fatigue of unknown origin. The intention may have been practical, but the consequence was the trivialisation of a serious neurological condition. The name change also shifted focus away from biological understanding towards psychological explanations for what is, in reality, a devastating physiological illness.
Living with ME has taught me patience, humility, and resilience, but it has also taught me the importance of language. Insisting on calling it ME is not stubbornness or defiance; it is an act of truth-telling. It is a way of saying that my experience, and the experiences of thousands of others, deserve accuracy, respect, and acknowledgement.
I write about this because I want people to understand that what we call something is not a small detail. It shapes everything from diagnosis to treatment, from social perception to self-perception. ME is real, it is serious, and it is not just fatigue. Every time someone insists I use the term CFS, I feel a slight pull against the reality I live every day. And I resist, gently but firmly, because ME deserves that respect.
So when I go to hospital, when I talk to doctors, when I explain to new friends or family, I say ME. I explain that it may be labelled CFS in some systems, but for me, the distinction is vital. It shapes my experience, my understanding of my own body, and my sense of identity within this illness. ME is not a lesser version of something else. It is not a synonym for tiredness. It is the reality I live with, day in and day out, in every ache, every thought, and every moment of careful energy management.
And perhaps that is the lesson here, for anyone reading this: listen to how people with chronic illnesses describe their experience. Ask, clarify, and respect the words they choose. For me, that word is ME. It is not just a name; it is the acknowledgement of a life transformed by illness, and the call for understanding that goes far beyond what fatigue can ever describe.
It is also important to acknowledge that ME can be life-threatening, though this affects only a small percentage of people with ME, typically when the illness reaches its most severe stage. Severe ME can leave someone entirely bedbound, dependent on others for basic care, and at risk of complications that can, in rare cases, be fatal. This reality underscores just how serious ME is, far beyond the misconception of simple chronic fatigue.
ME is not something I have lightly accepted. It is something I live with, navigate, and advocate for every single day. And I refuse to let it be diminished to CFS, because words matter, experiences matter, and my reality matters.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
You’re not alone here. You’re welcome to stay as long as you need.
Frequently Asked Questions About ME and CFS
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Many healthcare professionals use the terms interchangeably, but from my lived experience and from wider patient understanding, they are not simply the same thing. Myalgic encephalomyelitis describes a complex, multi system neurological condition. Chronic fatigue syndrome focuses on fatigue as the defining feature. For many of us, fatigue is only one part of a much bigger picture that includes post exertional malaise, cognitive dysfunction, pain, sensory sensitivity and immune issues.
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I refuse to use it because the term chronic fatigue syndrome can minimise the seriousness of the illness. It centres fatigue and ignores the neurological and systemic impact of ME. Over time, the label CFS has contributed to stigma, misunderstanding and dismissal. Choosing to say ME is, for me, about accuracy and respect.
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In practice, many clinicians treat them as the same diagnosis. However, some patients experience overlapping criteria and identify with both terms. I personally say I have both, but I still choose to refer to my condition as ME because it better reflects my lived reality
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Yes, so much more. ME is not ordinary tiredness. It involves post exertional malaise, meaning symptoms can worsen significantly after physical or cognitive effort. It can affect memory, concentration, temperature regulation, digestion, sleep, pain levels and sensory tolerance. It is a whole body illness.
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In a small percentage of very severe cases, ME can become life threatening due to complications and extreme debilitation. This is rare, but it underlines how serious this illness can be. It is not simply chronic fatigue.
