We are only here briefly (for Vanessa Li)

We are only here briefly
Our life burns with us
Even if it is smaller, dissipated, flickering,
with ME
We must do what we must
To shine
To speak
To stand up
For ourselves
For there is no effective level
Of representation
Out there
Where it counts.
ME symptoms go unrecognised
Untreated,
Mislabelled
Undiagnosed
Misrepresented
Mistreated.
Confusion
And complication reigns
Where a straightforward,
Honest
Medical pathway should exist.
Meanwhile
Precious friends and acquaintances
Die
From lack of knowledge,
Lack of Respect,
Physical neglect,
If not outright harm
Done to them.
When will it be enough
For the Medical Establishment
To be ashamed?
For the Government to act
With genuine integrity?
When will our lives be equally treated
To any other acceptable disease?
Deliberately covered up
And negated
By a Fatigue campaign
That spans decades,
When will our voices
Be heard
And real change come?
When will there be hope for every single person
Who has Myalgic Encephalomyelitis?
Each death we hear of
Breaks our hearts
Each loss
Is simply unacceptable
Another beautiful soul
Gone from the world.
The silent loss of their presence
Echoes outrage
Round the world.
Who will hear
And take action for genuine change?
How many tears of sorrow
Must we weep?

Linda Crowhurst





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