M.E. - Myalgic Encephalomyelitis

M.E. - Myalgic Encephalomyelitis, is a neuroimmune disorder. In the UK M.E. (also known as Chronic Fatigue Syndrome or CFS) affects 250,000 adults including children and young people. M.E. ranges in severity from mild, moderate, severe through to very severe - around 1 in 4 people with M.E. are affected severely or very severely.

M.E. is much more than “just feeling tired” - it affects the whole body in many different ways and comes with a whole host of different symptoms and some people can go on to develop secondary conditions. 

Here are just some of the symptoms and difficulties that come with M.E.:


M.E. & Me: My story

I first got ill in 2012/2013 after a bad time with the flu despite being vaccinated because of my vulnerability to such infections. In 2013 was when I feel my M.E. symptoms first began to show but I was still living undiagnosed. When I first started to feel symptoms more severely many months later such as difficulty walking, sitting upright for long periods, fatigue etc. my GP just kept diagnosing me with 'Post Viral Fatigue Syndrome' and simply told me that with rest I’d soon recover; each time I was told this I’d follow his advice but I never did recover.

Then finally in July 2017 I saw a neurologist in London. He asked me questions about my fatigue and other symptoms, how much activity I could do before my symptoms worsened (Post Exertion Malaise) and how long did it take me to recover, did I experience widespread pain, difficulty with my cognitive function such as brain fog, unrefreshed sleep, poor mobility, muscle weakness etc. Other things had been ruled out to explain my fatigue such as low iron levels and vitamin levels, I was deficient but managing on supplements. He then went on to say that with the other things ruled out and based on my symptoms and physical examination that I had a diagnosis of M.E. He didn’t fully explain what M.E. was so I was more-or-less sent away to go and understand this new diagnosis on my own as well as how to live with it.

By this point my M.E. was moderate but I still needed carers a couple of times a week. But it felt a relief to have a diagnosis and to not blame myself for things like my extreme fatigue and why I struggled so my much with the symptoms such as PEM. Also knowing I had M.E. I felt I better understood myself.

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 being 'severe'. 

I was under this neurologist for a while and he co-ordinated some of my care such as supporting my need for the NHS to supply my with a wheelchair. Unfortunately I couldn’t get any M.E. specialist support as my NHS Trust doesn’t provide such care, as my GP put it recently it’s a postcode lottery when it comes to specialist services.

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’m also able to better mange my symptoms laid in bed. Despite this even when I’m resting my pain and fatigue levels are severe and most days any activity leaves me exhausted afterwards. There are so many emotions to go with this.

I have help from PAs/carers to support me with all sorts of tasks from getting washed and dressed to making my meals and drinks, reminding me of things such as my medication and taking me to appointments, social support amongst other things.

I’m now managing to live on my own with a care team of PAs/carers and community nurses as well as the support from my GP and I also have my CareLink which is a 24/7 emergency support service. I also have the love and support from my Dad too. Messaging my friends also helps with the feelings of loneliness and isolation. I used a variety of mobility aids including crutches, my wheelchair and my wheelchair electric add-on, my Batec. I love having my own home, it can be tough but my little bungalow is very well adapted to meet my needs.



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.


Some videos to help you understand M.E.


M.E. and me: BBC Newsbeat

 


Living with Chronic Fatigue Syndrome by Jessica Kellgren-Fozard


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