Where are the Strong Voices ? by Greg & Linda Crowhurst

photo by Nutdanai Apikhomboonwaroot

 


"Why are the UK patients’ support charities not 
vigorously refuting the false reasoning of the 
Wessely School about ME/CFS on every possible 
occasion instead of colluding with it?"

Margaret Williams Grey Information about ME/CFS 
Help ME Circle 28th April 2011

Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?

Where are the strong voices standing up for the separation of ME and CFS ?

Where ate the strong voices condemning the psychosocial clinics ?

Where are the strong voices suing the psychiatrists for misrepresentation , misinformation and academic misconduct ?

Where are the strong voices speaking out against euthanasia ?

Where are the strong voices condemning the CDC criteria and the CFS label ?

Can you find one Charity doing all these things ?

Can you find one Charity that makes  people feel and believe that  they  are actually representing the truth of ME  ?

It's one thing to live in the virtual world of the online ME community,  but how many Charities  are breaching the interface between the virtual world and the real world and how many Charities are actually making  an impact upon policy  ?

Whenever one conducts social research on any topic - benefits, politics, one rarely finds an article or an analysis by an ME Charity - it's the Scope's the MENCAP's, the MIND's that are speaking out

Anyone who really has ME knows they are being abused by the system . They know that none of  the Charities are effectively speaking up and bringing about  radical change . 

They know there is too much complicity and compromise, not enough focus on the real suffering and the radical change that is needed.

They know there is very little understanding  of the suffering of severe NE and how it could be alleviated .

Where are the articles in the newspapers and the journals that count ?

Where are the headlines? 

Who cares ? Very few in reality . Activisim is so much more than being ill and speaking up; it is an ongoing battle of exhausting immensity that takes everything from you in the fight to try and gain a shred of truth out there in the real world.

A whole community may be speaking to itself but is hardly having an impact
There are not enough people saying the right things, doing the right things, challenging the institutions effectively enough holding seats of power to make a real difference

Perhaps what us needed is  anew grass roots me movement really driven by people with me , not by people who do not even have ME  speaking on their behalf .maybe no movement at all.

Perhaps the only way to be effective us to be an individual who dares to speak up and act .

Once you are enmeshed in a group you are compromised .
Does anyone have a clear vision of how to really make change happen ?

How many more decades do we have to be abused and compromised away ?

There may be a few voices speaking out,  but it still feels as if we are getting nowhere, because we cannot break through the power-hold of the psychiatric  lobby.

Which Charity  is  digging deep , to find the fundamental root cause of the inertia , the  deliberate negation. and stagnation and change it  ? Unless you get to the bottom you are never going to heal it.

All the time we compromise we dilute the outcomes and water down truth and hope.

It's uncomfortable to ask yourself  :

Are you compromising  ?

Are you challenging ?

Are you acting ? 

....and if you are not, who have you given your power to to speak up on your behalf ?

 Just because they are an ME Charity , it does not mean they are speaking up for you.

It's not enough to ask for an ME consultant, it is not enough to push for research, it is not enough to push for a clinic, it is not enough to hold a conference , unless you identify clearly who you are speaking for . All those things can be compromised away while seeming to be doing something.

The consultant's hands are tied if the systems and structures are not there to back him, if tests and treatments cannot be agreed or implemented.


Research can be compromised if you do not use the clinical criteria that will identify ME alone .

A clinic can be compromised  if it is treating the wrong symptoms.

A conference can  be compromised if you do not clarify the difference between ME and CFS..

It is not  enough to say you represent ME if you are not addressing the needs symptoms and experience of the severe ME sufferer;  that is how easy it is to compromise away the truth while creating the illusion you are doing something.

The time to honour ME is long overdue. Who can say they are ?

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