The greatest danger for people with ME

The greatest danger for people with ME
Is its misrepresentation as  fatigue.
Its misinterpretation as a condition or syndrome.
Its mispresentation  as a mental health disorder.
It is caused by physical dysfunction.
It is a neurological disease.
There is no cure.
The greatest danger comes from complacency
From not realising  the name does matter
From compromising away  its true nature and reality
From putting  funding or power or status or  compliance with the fatigue lobby
Before speaking and representing the Truth of ME
The result of complacency and compliance
Is the  current  lack of appropriate  biomedical services
For people with ME
The abuse and wrong treatment of people with genuine ME
The denial of symptoms
And the legitimisation of misinformation
And  medical neglect.
When will the people who have genuine ME
Be seen
Acknowledged
Heard,
Listened to
Respected
And properly provided for?
What do we have to say
To be effective ?
What do we have to do
To get a fair response?
What  do we have to experience
Before the world listens ?

What  more do we have to suffer
Before the governments and the health services
Of the world acts responsibly
And  treat us properly
For the neurological
Severely debilitating
Physical Disease
That we actually have?

Comments

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

THE STONEBIRD DEFINITION OF SEVERE ME

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis