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broken lips


Do you :

Know what it is like
To be an irritation to
The one you love ?

Where even the noise,
Of your thinking
Is too much for her ?

To apologise for
naturally  kissing
her abused head; 
for she could not  tolerate
the caress of your
whispering lips ?

To be an idiot for picking up a plate
Too ear-splitting !!!!

To eat on your own

To feel the nightmare
in your guts
when you look into her
her brown eyes,
long since dulled by
soreness
and verging on despair ?

Through what you believed
long ago, 
would be busy days,
not ones you would spend
not knowing what to say
or do;
sitting
still as a mouse
in the company  of torture.


To find the backbone,
 to make the  phone call
to go to the meeting
this afternoon,
as tired as all the years
you have spent scrapping

To make the breakthrough
To get the advice
To be informed
To apply the method

Making her worse,
Much worse than fear
itself could have
had any
information on.

Galloping, hideous
Worsening
Cracking of
Your sanity

And you coping -
only by finding somewhere
to put  on your headphones
and finally
break the silence

Except she can hear;
You huddled in the corner

delinquent.

Oh yes,

..then you know Severe ME

 Greg Crowhurst Oct 28 2011




Film Review: Voices From The Shadows

Film Review: Voices From The Shadows

by Simon Overton (editor of “Missed Diagnoses” & Author of “Charcot’s Bad Idea”)










If I’m on an ME death list I just don’t want to know!”- Consultant Neurologist,
Edinburgh (following comments by an IOP psychiatrist that he was being forced to x-
ray his mail and take other security precautions after alleged threats from patients).


Medicine and Psychiatry in Britain are under siege. Doors are being kicked down
by ski-masked thugs whose one objective is to abduct the children of medical
professionals. This is not for money or extortion but for compliance by hardworking
doctors with what these ME activists regard as the most effective treatment for
their condition. Across the country psychiatrists have been forced to take extreme
measures, mail is x-rayed, visitors searched and children are escorted too and from
school in case they are snatched. The situation is grim with many families unable
to see their children, once taken, for months if not years, held as they are in locked
rooms, often in ramshackle buildings with little care or compassion.

If the previous paragraph were to appear in the Guardian or other newspapers it would
be a national outrage, the Government would expect the police to make arrests. The
group would be infiltrated by special branch, intelligence would be gathered, the
crime would end and the criminals brought to justice. There would be heavy prison
sentences.

The Film Voices from the Shadows, a shocking and deeply disturbing documentary
produced and directed by Natalie Boulton and Josh Biggs, makes clear that it is
patients themselves who have suffered abuse at the hands of some elements of the
medical profession. It is parents whose children are profoundly ill who have had
their doors kicked down by police and social services whilst psychiatrists sign
section orders and remove their children to locked rooms in locked wards. Yet
what is remarkable is the restraint the film shows. We see the suffering, we hear the
families and children describe their experience. The contributions from world experts
including Dr. Nigel Speight, a consultant paediatrician and Prof. Leonard Jason add
a profound clarity to the narrative. Jason says candidly “This is as important as any
other major illness, whether it is cancer, heart disease or AIDS.”

Biggs camerawork is sensitive rather than dramatic, this is not sensationalism, the
tone and mood are one of careful reflection on patients neglected and disenfranchised
from proper medical care and attention. It is a call for more clinical research, more
understanding, to support charities such as MEResearch UK and the 25% group.

As Jason puts it :

Voices from the Shadows is the most important and significant film on
pediatric ME that has ever been produced – Prof. Leonard Jason

http://voicesfromtheshadowsfilm.co.uk/

Speak Your Truth Presentation


Speak Your Truth

There is a huge amount of misinformation  surrounding  Myalgic Encephalomyelitis; I emphasized , in my presentation at the AONM / Midlands Fibromyalgia Group  Irish International Conference on Oct 9th, how important it is to stand up for the  truth of ME, as a devastating,  neurological disease .

For the last seventeen years I have cared fill time for my wife, who has Very Severe ME. I have learned a lot about how to cope, how to care for someone that ill and how to fight.

It is very difficult, there are  not many doctors or consultants with the experience and knowledge to know how to treat people with ME.  The fact is, if  you  are to achieve anything for the person you will have  to fight  every step of the way. 

We  have shown  how it is possible to get an biomedical service , that the person with Severe ME does not have to left , with nothing being done for them, for decades on end, as is so often the case.

It  takes enormous courage , as a carer, not to compromise, to keep on struggling despite  the odds, to put oneself on the line, time and time again; to  never give up, to find a way through  the never-ending,   grinding pain and suffering, to   make the  necessary connections, to advocate , to push , to deal with the inevitable inertia and snails pace rate of change - and your own anger.

For sure you will be pushed to the edge , as I showed through the  paintings I shared, but with my wife  so completely ill, giving up has never been an option for me.

Hearing  the person’s  truth - which  brings its own issues and then standing up for it,   is the only way ultimately, I believe ,  that you can help the person  with Severe ME and yourself. 

In my presentation I tried to share a little of what I have learned : how to  be in the moment with the person, how to  focus , how to be gentle ,  how to keep going and growing .

Art, music, writing, these things keep me alive, and give me enormous hope .

I am greatly encouraged these days by the pioneering work of the AONM ;  they have seemingly burst out of nowhere , with  a  fresh new energy, a  dynamic , ultra-committed  approach to working alongside patients and carers ; an uncompromising determination  to  find a way forward, especially for the most severely ill. 

In all these years, I  have never known anything like it. I feel we are riding a wave of change, at last.

 One  day soon and it won’t be long, now I feel,  we will , all of us, surely make that long-awaited and desperately needed biomedical  breakthrough.

Tenth Anniversary of The Breakthrough Prayer


October 8th 2011
The tenth anniversary of The Breakthrough Prayer
We celebrate with a poem from Theresa :

The child within you

Sweep your house clean, each moment, Especially when night falls… For will your house be there tomorrow? We know not the time or hour… Anger held tight; furious fists Drive finger roots and nails Through the body, mind And spirit map, binding it in. Surrender to God’s Holy Spirit, Embrace the ocean and without fear And arms outstretched be carried through The water to the salty depths And give it ALL to HIM. Who waits, within, without, longing Through your grief, hidden, Calloused by time, down the long Lonely years of repression To set the CHILD in you FREE On bedroom carpet make your desert, Where stars touching heaven, spill out In startling clarity into the ubiquitous hush Of His Presence… Where each breath and tear and smile is heard ‘Ask and it will be given you Seek and you will find Knock and the door will be opened’ A guarantee from Him Who was and is and is to come Amen
We pray for the success of the world wide premiere of Voices From the Shadows today at The Mill Valley Film Festival.

We pray that it will make a breakthrough happen, that people will be shocked to see the neglect of people with ME and the reality of Severe ME, that it will change hearts and minds and bring much needed light to the truth of this devastating physical disease.

May Voices From the Shadows bring about a fundamental shift in attitude and integrity towards treating this disease with both the seriousness and funding needed to find a cure and to separate psychiatric fatigue from the neurological , multisystem dysfunction of myalgic encephalomyelitis.

We pray especially for the people involved in the making of the film and give thanks for their bravery in making themselves vulnerable in this way for the good of many.

We give thanks also for all the personal and medical breakthroughs that have been held in the power of the Breakthrough Prayer throughout the last decade ! Alleluia !

World Wide Premier today : Voices From The Shadows


World wide premiere of Voices From The Shadows, The Mill Valley,  Film Festival, USA, Saturday 8th October2011


The reason we participated in the film is because we want the secret suffering  of people with Severe ME to be seen and respected properly, rather than the common media image of ME which is portrayed only as Chronic Fatigue, as being "tired all the time" with perhaps a sore throat, or depressed.

The representation of ME has a form of depression by the media has done so much damage,  in  ordinary people's understanding and image of people with ME.

Depression  is the last thing you have in Severe ME ; in order to cope, to survive, you have to maintain your internal integrity and sense of who you are in the face of an horrendous onslaught of disabling and debilitating neurological symptoms,which  tend to be omitted from the popular image of ME, but ultimately is what the disease is all about.

If you have not  got neurological symptoms , you do not have ME ;  that reality is neglected to such an extent that biomedical tests and treatments are completely ignored, even refused to ME patients and they are treated as malingerers and nutcases, people who just aren't trying hard enough, who somehow are at fault for just being ill.

If somebody says they have Cancer, they will receive compassion, concern and support from the medical profession, Social Services, society; if they manage to walk about, to engage in social activities, they are somehow seen as heroic , whereas the person who has Severe  ME, who struggles to engage with ordinary life, every moment of every day, but may be able to occasionally interact , is more likely to be misinterpreted as being not really ill and not needing the help and understanding which is critical for them to survive.

Let us hope this film brings about a radical shift in people's awareness of serious neurological nature of this neurological disease and the need for biomedical integrity.

Let us hope that the truth will be finally heard  that ME is not a psychiatric illness and should not be treated as such.

We believe it is not possible for anyone,   with any spark of humanity, to  watch Voices From the Shadows and  not emerge profoundly shocked , outraged  at what the psychiatric lobby  have done ; it is gut-wrenching. 

(Link to the premiere  :  http://mvff2011.inticketing.com/films/166223)