HOW MUCH LONGER WILL WE BE OUTCASTS?

HOW MUCH LONGER WILL WE BE OUTCASTS?
I simply cannot bear the oblivion
caused deliberately
by the psychiatric lobby
The misrepresentation
The misinterpretation
The mispresentation
The mistreatment
The denial
The arrogance
The foolishness
The ignorance
The negation
The pretence
The vested interests
The careers
The ideology
The fantasy
The imagination
The cruelty
The complicity
The compromise
The deceit
The laziness
The crass institutionalised destruction of my life and thousands of others.
And why?
I simply do not understand why my reality
And the sheer physical suffering
Of the most severely affected
Neurologically ill
Continues to be downplayed
Passed over
Left
Deleted
From adequate medical investigation
Proper medical respect
Interested and experienced biomedical practitioners
Accurate interpretation
And a proper medical health service
With ongoing monitoring and correct medical support
Why is this not happening
When the physical agony of my existence
And so many others
Is real and intolerable?
How can they keep getting away with this pretence of a service
That offers nothing to people with neurological ME?
And why does the government continue to back this barbaric neglect
Compromising our lives away
With the CFS misdiagnosis
Obstructing proper medical testing and investigation
With biopsychosocial mistreatment plans and Fatigue services?
Twenty six years and what have I got?
Several ME diagnoses
A string of mistreatments
Harm
Neglect
Insecurity
No consultant
No proper representation
No adequate investigations for my neurological symptoms
No safe pathway
No clarity of who can be trusted to not misinterpret me
No hope for the future
No medical back up
No specialist service
It is just
Not good enough
What more do we have to do
To get people in power
To listen
And act
With integrity
To give us what we need:
Proper identification
Specific criteria
A separate ME pathway to CF
Inclusion in biomedical research
ME consultants who know about ME
Not fatigue
New, serious, safe medical testing interpretation and respect for serious severe symptoms
No more fobbing off ignoring and downgrading us
Medical treatment and monitoring
Understanding how to help not harm us
and a much better quality of life?
When will this ever be?
How much longer will we be outcasts?
Linda Crowhurst

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