What is ME/CFS?


Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) put most simply is chronic fatigue. It can affect people at any age and can come on as a result of a traumatic experience, or just as a slow development – everyone is different.

Symptoms can include fatigue (the degree can vary from person to person), muscle and joint pain – when this has been particularly bad I’ve barely been able to move and I have needed someone (usually my Mum) to come and help me to complete the simplest of tasks – even just getting out of bed can be a struggle! Another symptom is something we like to call ‘brain fog’ which as you can imagine is when your brain is so ‘foggy’ you just can’t concentrate! You can also get other symptoms such as IBS, memory problems, sensitivity to light and sound, and a lack of temperature control. There are others as well, but for me, they are the main ones.

My Story

I was experiencing symptoms of ME/CFS from January 2014 and was diagnosed with ME/CFS in July 2014. It took a lot for me to be finally diagnosed but once I had it was both a relief and a disappointment (I actually wrote a poem about how I felt directly after being diagnosed).

In the March, after one Doctor told me, and I quote, that I “was just a normal teenager who got tired and stressed”, I was determined to make them listen and to get a proper diagnosis. For anyone that knows me, I am not one to sit around watching TV all day… unless I am genuinely ill. So it’s safe to say that I very nearly punched that Doctor in the face that morning!

It took the Doctors another 2 months after that to start taking me seriously. And you know what it was that made them believe me? A panic attack. In the middle of my most important A Level exam. In a huge hall with a whole load of other students in there. How embarassing. Once my new Doctor heard about this she told me to come back as soon as I had finished my exams and she would refer me to Newcastle where I could get a firm diagnosis of ME/CFS.

After that things ran fairly smoothly; I got the diagnosis I wanted on 28th July 2014 and here I am now writing this piece. Oh how I wish I could say nothing of interest happened in-between! But at least the main question has been answered, you can read my story in more detail in the following posts:

How It All Began… Glandular Fever
How It All Began… Life, Love and Loss
How It All Began… Post Diagnosis
How It All Began… Home Sweet Home