Far from Cute & Fluffy.

I’d like to start by apologising  for the  confusion and inconvenience caused to many of you by my  having an illness that’s not evidently obvious for you to see, Myalgic Encephalomyelitis (M.E) to be exact, a physical illness & multi-systemic disease, classified by the world health organisation on diseases of the nervous system (Neurological) .

I would’ve much rather of chosen  one that came with a neon flashing light or failing that at least a  more popular  fluffy  palatable one,
but  unfortunately  I didn’t  get the option of an  A, B or C.  As medical, media and public perception go, M.E is without doubt the witch hunt of the modern age.  Back in the 17th century a suspected witch was tied up and  dunked in water, the water god had anointed baptism stylee, so if she sank and drowned it meant she’d been accepted by the holy water and  was deemed innocent, but if she floated  she was  found guilty of being a witch because it was believed the water rejected servants of the devil. So then men with long poles were hired to push her under and hold her there til she drowned….either way they killed her…

Fast  forward to the early 1990’s young M.E sufferers were tipped from their wheelchairs into swimming pools watched by consultants and nurses,  if they sunk they were deemed genuinely poorly therefore telling the truth, if they floated or flailed about trying to save themselves from drowning, it was deemed they had some energy, therefore they were lying and weren’t physically ill at all, but had a mental illness.

Young and old were forcibly removed from their homes and sectioned under the mental health act or taken into hospital against their will. Sophia Mirza was one such women, & instead of giving someone the help they need when desperately ill with a physical illness, she was told that  she would be sectioned if she didn’t attend a particular  M.E clinic . Having attended an M.E clinic myself  I can confirm they are completely,utterly & frighteningly inadequate. The effect on Sophias health was devastating and she died at the age of 32, the first person to have M.E/CFS as cause of death on their death certificate. http://www.sophiaandme.org.uk/

We have another case still going on right now in Denmark  with Karina Hansen, a young  girl forcibly removed from her home  in Feb 2013 and forced to undergo experimental treatment, she is still being held against her will today.  …..

M.E  Sufferers are being  killed, literally, and for those of us who’ve battled to dodge the guillotine so far, we’re still faced with a daily dose of prejudice, misleading venomous journalisim, and public acceptance of such treatment , not helped by sensationalized programmes  such as Benefit street, Those of us not lucky enough to be inflicted with an illness the public can buy into with AAAWWWWW!  Are dragged by the ankles and dumped in the Jeremy Kyle guest pile ………….shouts of “Hey, but I’ve got some teeth”  falling on deaf ears. The public have decided, if you cant see it and you cant stroke it, then it’s a benefit scrounger.

M.E Sufferers are often portrayed as activists, or angry and bitter…but is it really any wonder? we’re fighting for our lives with very little support from the rest of the world.

For those of you that know me, will know that I’m a fairly tough cookie, but having run the gauntlet for 24 long years  I can honestly say  there have been times I didn’t think I’d make it, there are still times right now where I don’t think I’m going to make it, We’re not only having to fight and deal with an illness that’s so devastating it’s taken away our jobs, our social lives,our plans,hopes and dreams & our very daily existence,  we’re living in fear of having to deal with a system still stuck with the mindset  of 17 century witch hunts . In that respect, wouldn’t you be angry?

It was only in the 1950's that those with epilepsy were still being sectioned, and deemed as having a mental illness or being possessed, I knew the mother of one such girl. She told me that nobody including herself, understood Epilespy, so the doctors sectioned her daughter in Mill Hill psychiatric unit when she turned 16. By the time Epilespy was understood she was too institutionalized and damaged to be released and is still there to this day. But thankfully it is a much more understood and accepted illness today and that's exactly what we're fighting for.

And its not a case that we're bitter, more weary and terribly frustrated by it all. Without government or general public help, with no celebrities willing to be ambassador for, or help an ME charity, it falls on those of us that are desperately ill and our carers to try and raise the much needed awareness and funds for research, & try and bring change. Nobody should have to live like this, many M.E sufferers eventually commit suicide, we’ve lost many dear friends in our community. Its taken years of hard slog constantly trying to change the ignorance, trying to raise awareness, trying to raise funds just to get off the starting block, and then a dog home has a fire and over night £850,000 is raised, so yes, while  absolutely right & wonderful,  when you’re living and suffering daily as we are, its a little hard to swallow.

None of us asked to get M.E, and I go back to the start of this blog and say that given the choice  of an A, B or C, I would choose absolutely anything but this. We don’t want sympathy, or pity, we want your understanding and your support, not just verbally but physically too. I know its hard to imagine what M.E is like to live with if you’re healthy and able bodied, but that’s what I’m asking you to do, to take a moment and imagine suddenly becoming ill one day, not recovering and then slowly losing everything that makes you who you are, from a job you've done for years, to your place in the community. Then imagine nobody believed you and everything in this blog happened to you too, how would you feel? How would you cope? And I’m asking you to not shy away from it just because its not popular, or fluffy.

I know there will come a day when the world will have  a better understanding of M.E and the help, support and medical care will be in place but that’s still some way off, and while nothing & nobody will ever be as popular as a cute and fluffy on four legs, we need you too, to help us, to get involved  & help us change perception so that people with M.E  will be just as understood  and treated with the same respect and dignity as those with  Cancer, heart disease, MS, and other well known illnesses. 
                                      Thank-you for Reading, Stay Blessed
                                                       Back Before Elvis


  1. Never ever apologise for something that isn't your fault.Stay blessed too matey. {{{HUGZ}}}

  2. Eloquently put and thank you for saying what we all feel <3 xx

  3. You're the toughest cookie I know, and many are blessed that YOU continue the fight.
    Big respect, and HUG from me to you. ♥

  4. Thankyou so much for reading, I only posted it this morning so didn't expect the 200 people,who've seen it already :) , commenting, sharing, its all good , its all mega appreciated, anything that gets people talking and even getting a smidgen of understanding is worth it, We can only keep trying XXX

  5. Well done Stacey a great article xx

    1. Thanx, i'm on a Twitter campaign, sending it out to as many stars and celebrities, if even one reads and RT's it would be a blessing. Feel so weary some times like the rest of you, but just have to hold onto hope and not give up, Big Luv :) xxx

  6. Thanks for a great blog. Like you I am trying to raise awareness and better understanding of M.E.
    I live for the day when it will be properly recognised and treated. Sometimes I think it's all that keeps me going.
    So like you I'm holding onto hope. I hope it comes in my life time xxx


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