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