Stonebird

What's  changed, I would like to know ,  since Ferenczi's ,  suggestion in 1921,without actually seeing a patient with Tourette syndrome,  that the disease  was the symbolic expression of masturbation caused by sexual repression (Kushner 2000).

What's changed since McEvedy and Beard's assertion in 1970 , again without seeing a patient, that Myalgic Encephalomyelitis  is a case of "mass hysteria " ? 

What's changed since Depression was diagnosed as narcissism, rather than Limbic-cortical dysregulation ?

What's changed since   Obsessive Compulsive Disorder was put down to poor parenting rather than frontal-subcortical circuitry and right caudate activity ?

What's changed since   Schizophrenia was said to be Narcissictic escapism rather than NMDA receptor activation in the human prefrontal cortex ?

What's changed since   Visual hallucination was considered to be Narcissism rather than retinogeniculocalcarine tract, ascending brainstem modulatory struc…

Stonebird

It is time to stop neglecting people with Myalgic Encephalomyelitis.

It is time  to end the psychiatric domination and abuse of people with  ME.

It is time to stop the outrageous  misrepresentation of  people who are genuinely unable to move or are so weak they can barely function and who do not even have the required energy to enable full functioning of their own systems and functions, as exercise- phobic.


It is time to stop  fobbing people with ME  off with little or nothing, with no due consideration of their real needs.

We call upon the UK Government to protect us from over three decades of psychiatric misinterpretation, misrepresentation, mistreatment and collusion, by instigating :


A realistic, viable, specific definition of Myalgic Encephalomyelitis, that separates ME from vague fatigue conditions , alongside  better diagnosis and treatment of those fatigue illnesses.Funding of serious biomedical research using standardised, realistic research criteria that enables genuine …

Stonebird


The ongoing misinterpretation of CFS as equal and the same as Myalgic Encephalomyelitis, resulting in wrong treatment protocols, misinformation ,endangerment of health and lives, confusion , a lack of medically aware practitioners, a lack of clinical understanding of the full disease and how to medically support and treat it .
The ongoing misrepresentation of ME as a vague fatigue condition, treatable with CBT, GET , controlled with sleeping pills and pain killers, which has resulted in the complete neglect of the most severely affected : who have multiple physical symptoms and complex system dysfunction.
The ongoing misdiagnosis of ME and other possibly treatable diseases, under the vague CFS criteria, which encompass a wide range of poorly defined and poorly investigated illnesses -including Chronic Lyme and other rare diseases , leaving the field wide open for psychiatry to dominate and wrongly influence health provision.
The fatigue advice currently being propagated by …

My love of web design , the desire to promote good quality information on how to care for people Severe ME/Very Severe ME,  plus my JOY at being short-listed for Nurse of the Year has inspired me to build -with love, a web  App to share the most important principle of care that we have learned : the MOMENT Approach.

It  is  my celebration !! 

This App is an overview of the MOMENT Approach: there is more information in my new book "Notes for Carers", which will be out soon !

http://www.stonebird.co.uk/moment/index.html

I CANNOT THANK THE BJN enough for the incredible honour of having been short-listed for Nurse of the Year Award.  It would not have been possible without the profound experience my wife and I have shared, growing always in love, understanding and partnership, through every moment of indescribable agony she has experienced with Severe Myalgic Encephalomyelitis (M.E.) The award is a confirmation of all that is good and noble about the nursing profession, for even though I was only a runner-up last night, it is still an extraordinary achievement for an unpaid nurse carer to be recognised and validated in this way. I had to make the difficult decision not to attend the Ceremony in person. It highlights the stark reality of caring for someone with this devastating, neglected neurological disease. My priority has to be my wife's health. In the end there is no greater choice. People involved in the care of people with Severe/Very Severe ME have to make these choices every single day. I was p…

Thank you so much  to everyone : you  have helped  me reach the Nurse of the Year Award tomorrow !  

Already just being nominated has helped me set up a meeting, to discuss Severe ME at a very high level indeed: more news, I hope,  next week.

(This is an extract from my forthcoming book : "Severe ME : Notes for Carers")

A  

Ask: if you do not know what to do, ask the person at an appropriate time or    
    whoever the person agrees you can ask. Avoid panic. 

 Awareness: develop a conscious awareness of the person and their needs. Be aware of how your every sound, movement action impacts the person.

 Attention: pay attention to the smallest details. Pay attention to any signals the person may be giving our non- verbally as well as verbally.

Advocacy: if you are asked to advocate for the person, make sure you accurately and adequately represent them.

B 

Be careful: it is easy to make a mistake. Every action can lead to catastrophe potentially, if done wrongly.

Be bold in your actions and believe in yourself as a carer. Get it right.

Believe in the person and accept their illness, even if you do not fully understand it, is essential to providing good care.

C  

Care enough to really learn all you can about the person's need…

It is to my joy that Greg Crowhurst has been short listed to one of three people for the BJN Nurse of the Year Award. It is my view that no one deserves this award more than him and I believe this will shine through his application, backed nationally and internationally by individuals and charities who know the true reality of this devastating illness and the impact of neglect and the fatigue misdirection, that has caused so much harm to individuals, families who hope for medical respect and a breakthrough in genuine biomedical understanding and treatment and sensitive aware care.

http://www.bjnawards.co.uk/node/146

Greg, is a wonderful, kind, compassionate, enthusiastic, determined and committed man, who has dedicated his life to loving me despite me having the most horrendous and devastating neurological disease in one of the most severe forms. This in itself is incredible, seen from my perspective alone. Not only has he loved me and cared for me for over two decades and not abandoned…

ONLY POETRY CAN BEGIN TO EXPRESS THE LEVEL OF SUFFERING IN SEVERE ME. TO WITNESS LINDA WEEPING  IN TORMENT DEFIES WORDS, IT IS SO HORRIBLE.

Utterly broken by the noise assault upon my being
It enters into every nook and cranny 
of my existence, 
every cell, 
every organ, 
it seems,
And devours me from the inside,
paralysing me from head to toe, 
so that time after time, 
no part escapes.
I am tormented.
I am scalded with pain.
I am raging at the injustice:
the continued violation of my home, 
my living space, 
my body, 
my life, 
my cells,
battered, 
twisted, 
demolished,
repeatedly 
till I can no longer bear 
another second 
of the horror of it.
It defines my life.
It breaks me into tiny fragments
so that my body will not, 
cannot, 
is not 
able
to hold me up,
to feel, 
to move, 
to think, 
to escape
this daily torture
from loud and violating noise attacks
to even simple ordinary things.
It is unrelenting
and a violent assault
upon an already weak 
and fractured body.
My life is being torn from me
And ripped apart 
repeatedly,
wi…

When I first became ill I lay still praying and hoping and expecting if I rested enough that the pain would diminish and go away. It did not. It's torment varied. I cannot describe adequately the intensity of constant pain assaulting me, yet flowing, changing, grabbing my attention totally. The worst pain was not the burning, itching crawling skin, but the solid, constant, tortuous throb, continuous within and without me.  Everything throbbing in agony with the beat of my heart it seemed, on and on and on, never ending. Not just in one part of me, but in all parts simultaneously. Loud to my inner self. Excruciating to my physical self. Unbearable to my awareness. Tormenting to my lifeless paralysed unable to move body. All in harmony, no where to escape. No way of diminishing it. My nose, my eyebrow, my eyes, my face, my head, my neck, my arms, my hands, my fingers, my guts, my back, my legs, my feet, my toes, my veins. No part of me was untouched by the pain filled throbbing. It was…

My inability to safely leave my wife and attend the Nurse of the Year Award Ceremony in London, a glittering, prestigious affair, highlights how chronically hidden the Severely Affected – and those who care for them are.
Another stark illustration is how the most severely affected are excluded from the recent IOM Report.
How could the IOM have got it so 
wrong ?
It's taken us a long time to dig down through the layers, but here is the Report's fundamental flaw:
The IOM’s contracted task toreview the literature and recommend clinical diagnostic criteria based on the literature, was wrongly worded; it was almost guaranteed not to bring new insight , clearly identify ME or protect it from psychiatric intervention and dominance.
The group could only review the current ME/ CFS/CF literature, which is deeply flawed.
It means that the Group did not look at the full symptom experience in ME. In no other disease definition are the most severely affected excluded.
“ME/CFS” , which the IOM…

Brain fog, not just the odd word forgotten Or misspoken More, like the snow has quietly fallen Filling my mind up With cold, icy, soft, empty nothingness Or shattering shards of ice crystal Painfully poking inside my head Freezing every image Covering over every thought With shivering powdery emptiness So that all is white, bland, bear And hidden from view Like furniture Wrapped away in a vacant house My mind long vacant too With dust sheets hastily thrown over everything So that nothing is identifiable Nothing is recognisable Except perhaps an odd shape here and there That looks like it should be vaguely familiar This is all that remains