Tuesday, 5 August 2014

Severe M.E awareness day



"M.E that's that thing where you get tired isn't it?"

No, no it isn't. M.E is an illness. A neurological illness that has been recognised by the World Health Organization since the 1960's. Yet so many people have never even heard of it. Or if they have it is often false statements like the one above. 

I myself suffer from severe M.E. I have very little independance and am housebound about 90% of the time. Ok I might be writing this post from abroad but I'm writing it from a bed abroad and we come here to try and let the sun do some healing. And although my life has changed beyond recognition I know things could be much worse than they are. 
Severe M.E at it's very worst can only really be described as a living hell. Unable to move, almost comatose, not being able to recognize your closest family, being so senisitive to light and sound they cause physical pain, tube fed and catheterized. Being so desperate for release from the constant exhaustion and pain but being told there is no cure, no effective enough treatments only tablets that target pain in different ways. Expected just to accept that that is it and to deal with it.

Now imagine being that ill and the police turning up at your home and forcibly removing you from your sick bed and confining you to a mental health ward. As was the case with Karina Hansen. Read my post on her on the following url (apologies I can't do direct link at the moment)

This case highlights just how much more awareness there needs to be of this illness. Recently things are changing somewhat. Most recently there is the story of Jessica Taylor a 23 year old girl with severe M.E who has been ill since the age of 14. Confined to a hospital for years in order to be tube fed. As a result she developed osteoperosis and was at risk of braking a bone if she moved. There has been some hope though for her as finally she has been able to withstand hydrotherapy sessions and developed her muscles enough to be able to lift herself up to sit in bed, to stand with assistance and to walk a couple of steps. You can watch the news article on BBC South East on following the link

It is a positive news story for the awareness of severe M.E as it shows photos of Jess pre M.E contrasted with photos taken whilst she was at her worst. The main highlight of the piece is the fact that it has taken 9 years for her to be able to do these very very basic things again. How often do you sit up in bed and then walk to wherever? You probably don't even give those steps much thought. Now imagine not being able to do that for 9 years. It's pretty well unimagineable. Can you imagine even saying my biggest achievement this year was to walk a couple of steps?

However what is important to remember is that Jess is far from better. She is not cured.There is no cure for M.E. Just because she has taken those few steps doesn't mean that she can now walk everywhere. Taking those steps has caused post exertion malaise and it will take her time to recover before she can try again. She is still having seizures and at times is physically sick. However she is over the moon to be experiencing these 'firsts'. 

One of Jess' biggest achievements though is setting up the charity "share a star" which sends a star and other gifts to seriously ill children and teenagers. Having been in that position she knows the importance of having something to hold on to. You can learn more about the charity on the following link.

Lastly I want to share an awareness campaign that started over on Facebook by Janet Smart. The black dress selfie for Severe M.E Day is representative of those many sufferers suffering alone in the dark. It also represents a mark of respect for Sophia Mirza who died of M.E  after being exposed to mistreatment, that left her even worse. Today (August 8th) would have been her 41st birthday and hence why this date was chosen as an awareness date. The day before her death Sophia's mother promised that her life would be a lesson to others and swore to raise more awareness of severe M.E. Learn more about Sophia and her story on their website.

You can read some more about the black dress selfie on Sally's blog at 

Details of how you can join in and help us raise awareness are on the following poster. Or simply share or retweet the poster. Or other awareness tweets or posts you see. If you care to share Sally's blog post or my own then please do.

My post is also dedicated to my dear friend Irene who passed away in February after 38 years of suffering with severe M.E. Missing her lots today.

I've included some more blog posts at the start of this posts by Anna and Chatlotte other severe M.E sufferers. Again my apologies for not being able to do direct links. 



  1. Thanks for your honesty and compassion, Sian. Hoping the holiday helps and the sun does shine on you!!

  2. You look beautiful in your black dress, it really compliments your figure! This was so well written too <3