Advocacy

canción para los enfermos de sfc/em

ME/CFS

This song is written in support of the #MillionsMissing protests that are happening globally in 2016 to demand more awareness of and research funding for the condition ME/CFS.

Photography: Karyn Adams

#MillionsMissing

Jenny was a painter
Her canvases described
Flowers found in nature
Defying odds just to survive

And she loved how they would blossom 
In the harshest of terrain
Mesmerising colours in the face of snow and rain.

But the things that shine the brightest are the ones that are cut down
Her body just as fragile as the orchids that she found
No shelter could be summoned from the ones who don't believe
They chipped away at her dignity

There are millions that are missing
Are millions who are chained
And they've never stopped believing 
That their lives can be reclaimed
They have trained to be survivors
They walk a path of stone
Worn out and alone

She rallies from her bedroom
She's a warrior online
She's not fighting for herself but for her sister Caroline

She had fallen so much younger, 
Yet to taste the fruits of life
Now she's lost her voice 
To take the mantle in this fight

There are children that she wanted
There's a job she'll never do
And sadder yet is that she's been forgotten but for a few

The ones who have the power they just wouldn't change their minds
Abandoned on the sidelines

There are millions that are missing
Are millions who are chained
And they've never stopped believing 
that their lives can be reclaimed
But they can't be left to flounder
This truth won't be outrun
There's work here to be done

Oh this life can be so frail
Those words til now have failed us
What'll you do

There are millions that are missing
Are millions who are chained
There's a growing sense of urgency
That something must be changed
If we face this thing together
Put our bodies on the line, 
If not now, when's the time.














#MillionsMissing

An attempt to highlight the suffering endured by people with M.E.

Am Still me even though ave got M.E
its still me am the one the one that you refuse to believe 
Am Still me even though ave got M.E
its still me and am crippled by this awful disease
called M.E

so tired I can barely raise my eyelids 
my Myalgic Encephalomyelitis
M.E Chronic fatigue syndrome 
have a little listen as am listing the symptoms 
incessant pain every minute every hour of the day 
and exhaustion that never goes away
all ma muscles and ma joints ache 
and their isn't even nothing i can take 
nothing i can take
it made me oversensitive to medicine
even find it hard to walk now am bed ridden 
sometimes i cant even talk, just mentioning
I get the sweats and the shivers no end to them 
on sunny day ave got my windows and curtains shut 
cause if I let them in the noise and light they hurt
tried everything to help, but nothing works 
do you really think anyone would make this up




friends deny my reality say its all in ma head
and my family acting as if am already dead 
try to say its depression just Get out of your bed 
but the person that i was how quick they forget
cause i always on the go like 24 / 7 
and all by myself a ran a house and raised two children 
try to say its my choice now come on who you kidding
cant you understand its a nightmare that am living
chronic fatigue pfft , that's an understatement 
am way beyond tired and all i get is berated 
slated, told if i only tried i could make it 
this is life and death i cant understate it 
and i know its hard tae understand it 
that's no excuse for the way ave been abandoned
bad enough trying to live with this curse 
but the disbelief it must be the worst

#MillionsMissing

Naomi Flanagan