I am honoured to be a team member and one of many ants in an organistion run by M.E sufferers called Let's Do It For ME who work in support of, and hand in hand with charity Invest In ME research In helping to raise awareness and much needed funds for the charity's aims of a Centre of Excellence, You can read all about LDIFME & jump on board if you feel you can help? If you're on social media, even things like
Retweeting and Sharing posts help to make a difference and is greatly appreciated.
So........LETS DO IT FOR ME!
Thank goodness things are now changing for us too, the world is waking up & the ignorant are in the minority and for the first time we're seeing real Hope. I believe alot of that is down to a UK Charity that's leading the way 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 run by Volunteers, this means there are no wages, so every penny of your donations go where they're supposed to.....Making a Real Difference. This is just one of the many reasons I support them, they take no wages, work bloody hard, and don't just talk, they're making things happen.
So If you as an individual or your company are looking to support a charity, I ask that you take 5mins out of your busy schedule to go check out the amazing work they are doing for yourself INVEST IN ME RESEARCH
... Life With M.E in 7
One young woman who I'd like to remember is Amberlin Wu who I only discovered after her death, but has certainly left a life long mark and significant legacy in the form of her story "The Box Story" not only because it's so beautifully & powerfully written but because this is about seeing a real illness through the eyes and mind of a real woman for whom it all became too much in the end.
For decades the Medical Profession & Media have behaved diabolically and certainly have alot to answer for. There are many conditions & different levels of illness where you can't necessarily tell someone is ill just by looking at them, in fact they may look absolutely fine, but sadly that isn't the case and the misunderstanding surrounding M.E means that sufferers have spent years at the recieving end of what can only be described as a witch hunt.
In fact in the 1980's medical staff were tipping M.E Sufferers out of their wheelchairs into the deep end of the swimming baths in an attempt to prove they would save themselves from drowning & did have energy after all and weren't physically ill . Adults and children with M.E were also being forcibly removed from their homes and placed in psychiatric units and denied visits from family and friends & forced to excercise.
I have an illness called Myalgic Encephalomyelitis (M.E). It is often, but not always the case that those with M.E go on to get Fibromyalgia and Osteoporosis..... and I did.
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, Co-ordination, Memory loss, Muscle spasms, Nerve Endings, Bowel & Bladder, Sensitivity to Light and Sound, Heart problems, Eating & Swallowing (Unsafe Swallow) and a whole heap of other stuff that you really wouldn't want to be dealing with....... Unless you're a masochist of course in which case you've come to the wrong website ?
Despite M.E being a physical illness & classified as such since 1969, there are sadly still a few in the medical profession determined to continue dragging it down the psychiatry route.
As a Community that's frequently rocked by the deaths of our friends & fellow sufferers, and after decades of Physical & Mental Abuse Is it any wonder we're Mistrusting, Angry & Defensive as often reported in medical & media articles? Despite the facts, There are still those in the profession unwilling to let go of old and ignorant psychiatry theories, given platforms to spout that ignorance and then awarded with knighthoods? I say again, is it any wonder we're angry? As with any prejudice. the damage it causes on an individual level as well as an international level is enormous.
I consider myself a tough cookie, but throughout Life, 27yrs of them with M.E, I can honestly say that nothing has been as frightening as being on the recieving end of such mass Ignorance and Prejudice, and by the very people supposedly there to help.
It's very similiar to the treatment of Epilespy sufferers back in the day. It was only in the 80's Epilespy finally became accepted as a physical illness, before that it was often deemed a mental illness and many were wrongly sectioned. Unfortunately some of those, only young teenagers at the time, were as adults too institutionalised to be released. I knew the mother of one such girl who went to her grave racked with guilt because she said "Doctors, consultants, & everyone I came across in the medical proffession kept telling me that she had a mental illness. Apart from the seizures she was a beautiful, normal, intelligent young girl and she begged me not to send her away, but the doctors convinced me I was doing the right thing and I didn't know any better, it was just the times back then, when doctors told you something you just believed them"
I wonder how many M.E sufferers this resonates with?
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. This fight is not only for future generations so they don't have to go through what many of us have been subjected to, it's for all those who have died in the battle for truth. No matter how many decades pass, I believe without a shadow of a doubt that we will rise victorious.