Myalgic Encephalomyelitis (M.E), Chronic Fatigue Syndrome (CFS), Yuppie Flu, Post-Viral Syndrome; all names for the same condition.  So why do I use M.E? 

The main reason I use M.E to refer to my illness, is probably one of the most common reasons; and that is because it doesn’t just refer to one symptom of the illness (Fatigue), it doesn’t describe it as a flu (short term illness) and it doesn’t imply you can only get it after already being unwell (Post-Viral Syndrome).  Although Myalgic Encephalomyelitis is a mouthful, it doesn’t just refer to a single symptom or indicate a single cause.  The majority of people I speak to, recognise my condition as CFS, even health professionals; it’s difficult for me when I hear this name because it doesn’t fully reflect the range of symptoms that come with this illness, it doesn’t consider the multiple bodily systems that are affected by this disease.

I couldn’t count the amount of times I’ve heard “Oh, Chronic Fatigue Syndrome…so you’re tired all the time?” as a response when I tell people about my illness.  You can’t blame people for recognising the most common name for the condition, but it’s disheartening and frustrating to have a life-limiting condition reduced down to a single symptom that most people assume is just ‘being tired’.  I’m going to use the brief description used by the M.E Association here, as it’s the answer I usually supply when someone assumes ME/CFS is just being ‘tired’: “ME/CFS is a complex, chronic medical condition affecting multiple body systems. It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity”. 

The issue with the name ‘Chronic Fatigue Syndrome’ is not that it only identifies one symptom of the illness, but that people wrongly assume fatigue is the same as tiredness.  It’s something I would have done before I became ill so I understand the mistake.  I’m going to use a couple of quotes here I’ve found online to describe the difference between tiredness and fatigue:

“Tiredness is the way we feel when we don’t get enough sleep. Fatigue is a daily lack of energy that can’t be solved through greater sleep alone.” – The Difference Between Feeling Tired & Fatigue – The Sleep Matters Club (dreams.co.uk)

“Fatigue is more than being tired or sleepy. People who have fatigue feel so drained that their exhaustion interrupts their daily life.” – Fatigue (clevelandclinic.org)

“Fatigue is that feeling of dragging a ton of bricks behind you, having no energy, no gas in your tank,” – Fatigue vs tired: what’s the difference between the two? | Well+Good (wellandgood.com)

Even in clarifying how fatigue differs to tiredness, it still doesn’t address the issue that fatigue is just one of many symptoms that affects someone with ME/CFS.  Not only does M.E/CFS refer to a condition with a number of symptoms, but it can also lead to secondary conditions.  Since being diagnosed with M.E, I’ve subsequently been diagnosed with Fibromyalgia, Inappropriate Sinus Tachycardia and chronic vitamin D deficiency.  So M.E/CFS has a widespread affect on the body, not just on energy levels.  Below is a list of symptoms that I experience with M.E to highlight the various symptoms that can be attributed to M.E/CFS:

• Joint Stiffness/joint pain
• Muscle pain/muscle weakness
• Sensitivity to light or sound
• Non-restorative sleep
• Fatigue
• Insomnia
• Hypersomnia
• Post-Exertional Malaise
• Headaches/Migraines
• Cognitive difficulties (issues with memory, word finding, sentence construction, communicating, difficulty focussing or taking in information)
• Sensitivity to infections or viral illnesses
• Flu-like symptoms (sore throat, swollen glands, blocked nose, fever, achiness)
• Orthostatic Hypertension
• Temperature regulation dysfunction (hot flushes, hyperhidrosis, heat intolerance, trouble warming up)
• Allodynia
• Exercise intolerance
• Muscle twitching
• Nausea

Sometimes it feels as if there isn’t a part of my body that isn’t affected by M.E/CFS, which is why I prefer not to use the name that only refers to one aspect of my illness.  There are those affected by M.E/CFS who are completely bedbound, it’s a debilitating illness and I think it’s important to make people aware of this.  It’s all too common to tell a health professional; “I have M.E”, and receive the reply; “You mean Chronic Fatigue Syndrome”, like I’m trying to make it sound more serious than it is, like my illness isn’t valid, like it doesn’t affect every inch of my life.  There are some health professionals completely ignorant of the fact M.E is categorised as a neurological illness and not a psychiatric illness.  I have a psychiatric illness and I can’t stand M.E being compared to it, or being likened to it.  They aren’t the same, they both affect me in different ways and shouldn’t be lumped into one category. 

So yes, I prefer the term M.E because people are more likely to inquire what the condition is and allow me to educate them; rather than hearing the word ‘fatigue’ and assuming the condition is just fatigue based and assuming I need a better nights sleep.  I’m not offended by those that use CFS or Post Viral Syndrome, and I mostly enjoy raising awareness for this condition, under any name; but it is frustrating when people only focus on an individual symptom rather than the whole illness.  Hopefully some of this post will be helpful to those struggling to explain this illness to others and I hope it highlights why a name can be so important when identifying an illness.