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.

Sad endings and hopeful new beginnings...

Sad endings...
Today we had the last ever session with our Home Start worker, Teresa. For the last six months she's been visiting once a week to play with my daughter, E, so that I could watch E play - something I really miss. E gets lots of fun and stimulation at pre-school and out with friends of mine, but I don't get to see it; having visits from Teresa has been wonderful. She has given us priceless memories, and has been very encouraging and supportive to me. I can't really believe her time with us has come to an end. We bought her some flowers, and my husband helped me make

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. 

"Your Call Will Beyonce As Soon As Possible"

Communication can be a hit-and-miss affair when you have ME. Between variable cognitive impairment and muscle problems (all the way from slightly weak, or a bit of twitching, to temporary paralysis), things can get a little tricky! Even if you can work out what you want to say and have the physical ability to speak, sometimes there just seems to be a huge block between the brain and the mouth, and the words you desperately want to say just won't come out.

And sometimes, as far as you're concerned, it's all worked fine - but then the blank/confused look in the other person's eye tells you something got lost in translation. I was once part of a hilarious online conversation where we were all recounting funny stories of ridiculous things we've said or done because of ME cognitive problems. One person's story went something along the lines of,

Tethered Butterflies

As today, May 12th, is International Myalgic Encephalomyelitis (ME) Awareness Day, I thought it would be a fitting day to start this new blog. I've put some information at the bottom of this post about the awareness day, what ME is, and links to respected sites for further information - please do have a look at them.

So, why 'Tethered Butterflies'? Well it all started from this image: