Severe M.E

M.E. stands for Myalgic Encephalomyelitis. It's an illness that affects 250,000 children and adults in the UK. M.E ranges in severity from mild, moderate, severe through to very severe. Roughly 1 in 4 people with M.E are affected levelly or very severely.

M.E & Me

When I first started to feel symptoms my GP just kept diagnosing me with 'Post Viral Fatigue Syndrome', though what virus was affecting me so badly was unknown. Then a few years later in 2017 I saw my FND neurologist in London. Some of my symptoms didn't fit with FND alone. He asked me questions about my fatigue and other symptoms, how much activity I could do before my symptoms worsened and how long did it take me to recover etc. He then went on to say that as well as confirming my FND diagnosis I also have M.E, a condition I'd never heard of.

A young caucasian woman lying in bed. She has brown hair in a braid and is wearing a grey t-shirt. She has an eye mask over her eyes and appears to be in a dimmed room. She is holding a hot water bottle which is inside a zebra print case.

I went home and had to look up M.E myself and also learn myself how to live with this illness.

As time has gone on my M.E has had it's ups and downs but ever so slowly, bit-by-bit my M.E has worsened and my M.E is now considered and classed as 'severe'.

M.E. is much more than just 'simply feeling tired'. I experience a wide range of different symptoms all over my body from memory difficulties, brain fog, different types of pain, autonomic issues, Post Exertion Malaise, flu-like symptoms and much more. For me I experience my M.E more as a neuro-immune condition so my immune system is also greatly affected.

I spend most of my day in bed because this is where I can get most comfortable and be able to reposition myself due to my bed being a profiling bed (like the ones you'd find in a hospital).

I have help from my PA to assist and support me with all sorts of tasks from getting washed and dressed to making my meals, reminding me of things such as my medication and taking me to appointments amongst other things she helps me with.

When I leave the house, a rarity, I need my wheelchair and someone to push it for me as well as having someone at all time. If I go out I wear my darkest sunglasses and noise cancelling earplugs due to hypersensitivity to light and noise. Leaving the house often take me days to recover and will cause an exacerbation in my symptoms.

M.E in the UK

M.E is a greatly misunderstood illness as well as being severely underfunded and researched.

Thankfully NICE have now revised their guidelines for M.E which I hope will improve the way M.E / CFS (Chronic Fatigue Syndrome) is seen and treated by medical professionals


“The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.” - National Institute Health & Care Excellence (NICE) 2007