M.E

"I Reckon I Could Eat A Tin Of Alphabet Spaghetti And Crap Out A Better Article On M.E Than Is Sadly Often Written In The Media"

I have an illness called M.E also known by it's medical name Myalgic Encephalomyelitis, that's .....My-al-gic (jic) en-ceph (seff) alo-mye (my) lit (light) is..... Put it together and what have you got? Bibbety Bobbety Boo... M.E is a chronic complex physical illness affecting the whole body with symptoms such as Exhaustion, this is not about feeling tired, we're talking about a total bone shattering painful body Exhaustion, Problems with Breathlessness, Brain function, Memory Loss, Co-ordination, Brain Fog, Muscle spasms, Nerve Ending problems, Bowel and Bladder, problems Sensitivity to Light and Sound, Heart problems, Eating and Swallowing (Unsafe Swallow) and a whole heap of other stuff that you really wouldn't want to be dealing with given the choice.

But sadly, living with M.E isn't a choice, it's a serious condition that can strike anyone, any age, any gender, any culture. It was so simple, one day 35 yrs ago I was struck down with Flu not knowing that life was about to change forever. I never recovered and as the months went on symptoms increased and my health deteriorated. It was a six year battle to get a diagnosis and by this point I no longer had a social life, had to put a halt on my music career and I was eventually medically retired from my job. After the M.E diagnosis I went on to get Fibromyalgia and Osteoporosis, which is quite common with M.E Sufferers. Despite M.E being classified as a physical illness by the World health organisation since 1969 there are still those in the Medical Profession and Media with ignorant outdated views still trying to drag it down a psychiatry route. I consider myself a tough cookie, but I can honestly say that over the years nothing has been as frightening as being on the receiving end of such mass Ignorance and Prejudice, and by the very people supposedly there to help.

I support a UK Charity called Invest In ME Research it's only a small independent charity but it's doing tremendous things. The Charity get no government funding and rely entirely on public donations.

The amazing thing that makes Invest In ME Research stand out from many other charities is that it's totally run by Volunteers, they have their own day jobs which means they take no wages from the Charity so every penny of your donation goes to where its supposed to go.....Making a Real Difference. This is just one of the many reasons I support them .

While we continue to go forward together and help realise the dream of a Centre of Excellence, Diagnostic test, Treatment, and Eventual cure, we must never forget the shocking cruelty many have suffered or ever let slip from mind those who haven't made it, those like Amberlin Wu, Sadly not everyone survives living with M.E, there are those that die from M.E or die from secondary problems caused by this chronic complex condition and then there are those like Amberlin, battle weary after years of fighting the illness and the prejudice that often surrounds it, that end up taking their own life, there are also more M.E sufferers travelling to Sweden to attend the company Dignitas who legally help with assisted dying.

She had sadly but beautifully written about her M.E Journey in "The Box Story" It was a story that resonated with me, as I'm sure it will with many of you? And although I never knew Amberlin I've felt connected to her ever since, and so in her memory I continue to share her story.

Despite the years I continue to fight for future generations so they don't have to go through what many of us have been and continue to be subjected to . Plus now we also have thousands of Long Covid sufferers and it's looking likely that they too could have M.E. So If you as an individual or your company are looking to support a charity, I ask if you'll take 5 mins out of your busy schedule to go check out the amazing work they are doing? If you've got this far ? Thankyou for your time, much appreciated. x

I wrote this poem One Stupid Dot and "What's Up TV" asked if they could use it for a piece, I love what they did with it and hope it continues to resonate with people and help raise awareness.