Severe ME Day…My friends speak out for M.E.
“Today has been the first Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
It is a day for the understanding of a horrific multisystemic disease, and a day for remembering those who have lost their lives to ME, and those who are right now suffering a living death.
I was lucky to be mostly moderate for the first fifteen years; then I became housebound, often bedbound for longer periods than when I was moderate, and am now mostly severe. Yet I still have my voice – many don’t. Many are so severely ill they are quite literally trapped in their completely malfunctioning bodies – bedbound, paralysed, tube-fed, in darkened rooms and in constant unrelenting pain – and are screaming on the inside; screaming to a world which does not want to hear.
I have been many times at a level of ill I quite openly admit I would never withstand if it was permanent; I would go home without a second thought. But I have the luxury of knowing there is a home; many are very, very frightened to die and they continue through a hellish existence because of it, even though they know their outlook is bleak unless urgent biomedical research is done to offer them a glimmer of hope.
Although I’m so ill and very fragile, I do at least have some control and that allows me to continue, although I do not truly live. And I am one of the luckier ones of the severe states.
Please, take a look at these links. Today marks what would have been the 40th birthday of Sophia Mirza, who died of ME in 2005. Her lovely mother, Criona, and I have spoken on several occasions and she has been so brave in carrying out her daughter’s wishes that her death would not be in vain and fighting the powers-that-be who have all the power but none of the brains!
I would urge all who know me and know what I go through to seek out the DVD of Voices from the Shadows, made by my friend’s brother and mother and an eye-opener into the world of severe ME. I have a copy and even gave one to my doc! Every little bit of awareness helps.
Most of you know that, for a lot of things, it’s too late for me; the damage has been done. But many are still capable of being properly treated if only enough money was raised for vital research in light of the idiotic government’s ignorance still about ME’s origins. It is a physical disease; a proven entity which shows no mercy to one’s sex, race or age.
We hit the £100,000 mark with LDIFME a while ago; now, the race is on for a Rituximab trial here in the UK, which would hopefully yield the same results or better than the Norway trial. Rituximab is an immunotherapy drug, which Pops had during his cancer treatment, and it now looks as though it could help those with ME, which is first and foremost a neuro-immune disease.
Like many diseases in their pathology, they are present due to a malfunctioning immune system. Fix the immune system, and in theory you fix the disease.
Please help us fix this disease before it’s too late to fix the damage caused by it.
Thank you for reading.