With Severe ME

With Severe ME
We are abandoned
We are ignored
We are neglected
We are abused
We are mistreated
We are harmed
We are misinterpreted
We are misrepresented
We are misdiagnosed
We are overlooked
We are denied
We are covered up
We are misportrayed
We are maligned
We are betrayed
If we were dogs
we would get better health care
Be better investigated
Be better protected by the law
And have better recognition and concern.
How bizarre is that?
If we had any other neurological disease
We would have a respected diagnosis
Investigation
Suitable Support
Appropriate Medical care
Knowledgeable practitioners
A clinical pathway.
Understanding.
Instead we have no biomedical clinics
No biomedical pathway
No centre of excellence
No choice of well known, well informed clinicians
who understand our illness
No real understanding
Nor clear and congruent physiological explanations
of our disease
No adequate or appropriate investigations
No safety and security
No clear treatment pathway
We are left at the whim of individual practitioners
As to whether they believe we are even physically ill
With no protection from any practitioner who chooses
To misinterpret and mistreat us.
How outrageous is that?
If we had any other incurable disease
We would not be fobbed off and left with nothing except
the unrealistic lame expectation to get better for no reason
With no means to gain that end.
How on earth can this continue
to be acceptable?
Why are the most ill, open to the worst interpretations
And allowed to be the most vulnerable of all?
Surely anyone who knows about Severe ME
and does nothing to change things
Must weep from shame?



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