Medical Neglect of ME

My story

My ME started with a virus in 2011, some months after the birth of my daughter. After the virus had apparently abated, the first symptoms I noticed were numbness, tingling, and pins and needles in my hands and feet; body temperature disturbances; vision problems; dizziness; clumsiness; pain; muscle spasms and weakness; sleep dysfunction; and cognitive impairments.

For 18 months the GPs at my local surgery refused to take me seriously. They didn't believe I had anything physically wrong, dismissed my reports of physical symptoms, and said I was depressed. I knew this was not true, and that although I was extremely fed up and frustrated, this was a response to my physical symptoms rather than the cause of them.

Do Not Go Gentle

Grab the cuppa of your choice and make yourself comfy, this is a long one! But it may also be the most important and passionate thing I've written.

I love Dylan Thomas' poem 'Do Not Go Gentle'. (Click here to go to YouTube to hear the full poem read by the man himself.) I know, I know, it's about death, but actually I think it's about life and how you live it. We all have challenges of one kind or another; do you just resign and submit to the hand you've been dealt? Or do you strive for 'life in all its fullness'? And what does that mean for those who are very severely ill, who are already in a living death?

Another poem I've thought a lot about lately is Invictus:

8th August is Severe ME Remembrance and Awareness Day

Today, 8th August, is Severe ME Remembrance and Awareness Day for all those who have lost their lives to this horrific disease, and for those still living with it.

People who knew me before I was ill may think my situation is bad (and don't get me wrong, I'm not saying it's great), however I honestly count myself as fortunate as I know so many others who have much, much more severe ME than I do. I know of people who have died from it, I know people who literally only have days to live, and I know people for whom every day is a living nightmare.

ME vs CFS - They're Not The Same!

This is an extremely important topic but one that I am in no way able to do justice to right now! So I'm reblogging this post from a fantastic blog: http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/ It summarises the history of the naming of ME, the difference between ME and CFS, and the damage done to both ME and CFS patients when the two names are conflated. Please visit that page to read the rest of this brilliant and important post. Thank you!

Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.