Search This Blog

Lies of breath- bereaving brazenness


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 structures ?

What's changed since  Auditory Hallucination was considered to be Narcissism, rather than frontotemporal functional connectivity ?

What's changed since  Eating Disorder  was said to be   Narcissism, rather than atypical serotonin system, right frontal and temporal lobe damage ?

What's changed since Bipolar Disorder was considered to be Narcissism, rather than prefrontal cortex and hippocampus, anterior cingulate, amygdala ?

Nothing,  for these "intellectual gnats" bereft of even a "smidgen of deductive reasoning", still continue to  put their abstract scientific ideology, their own careers and the profits of corporations they defend ahead of the citizen's needs or health care.  (Martin Walker "Dirty Medicine the Handbook")

Many, in the ME community would surely agree with George Bernard Shaw's assessment of the medical profession , which he  put it so well, in the Doctor's Dilemma :

"I do not know a single thoughtful and well-informed person who does not feel that the tragedy of illness at present is that it delivers you helplessly into the hands of a profession which you deeply mistrust, because it not only advocates and practises the most revolting cruelties in the pursuit of knowledge, and justifies them on grounds which would equally justify practising the same cruelties on yourself or your children, or burning down London to test a patent fire extinguisher, but, when it has shocked the public, tries to reassure it with lies of breath- bereaving brazenness. "

Ref :


Kushner H (2000) A Cursing Brain, Harvard University Press.

Walker M (2011) Dirty Medicine : the Handbook http://www.amazon.co.uk/Dirty-Medicine-Handbook-Martin-Walker/dp/0956409318

Shaw GB (1909) The Doctor's Dilemma http://www.online-literature.com/george_bernard_shaw/doctors-dilemma/0/

This is what we want.

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 research into the correct group: people with the full symptom experience of ME.
  • A new biomedical pathway specifically for ME not Chronic Fatigue.
  • A task force to investigate the symptoms of ME, specifically the most ill, excluding psychiatry totally from interference , misdirection, misinformation.
  • Those who mistreat and misinform about ME, to be held to account.
  • A sensitive, flexible, home bound service , giving assurance that this disease will be understood and treated with respect.
  • ME training to be  actually about ME not Chronic Fatigue, firmly rooted in biomedical truth and acute awareness of how to care for patients, especially the most ill.
  • An acknowledgement  that the psychosocial pathway is harmful, dangerous and misrepresentative of people who have the neurological disease, Myalgic Enceohalomyelitis.
  • An apology  for the deliberate and consistent degradation of this disease, the psychiatric mistreatment and misinformation that has been allowed to go from strength to strength for decades, the medical neglect and lack of safety, the lack of respect,  for those who have died from the disease without proper medical understanding or appropriate treatment, or even proper acknowledgement  on their death certificates.
  • The views, opinions, experience, knowledge and needs of the most severely affected to be fully taken into account.
  • An end to basing service provision or research  unrealistically only on those patients who can attend meetings, appointments, travel distances regularly and still engage with the world fairy regularly : they just do not represent the terrifying reality, not the full experience of this devastating, tormenting illness.
  • An end to the  misrepresentation of Myalgic Encephalomyelitis as a treatable fatigue condition.
  • Better scientific recording of test information and objective measurable medical changes.
  • Genuine medical treatment to alleviate symptoms. To seek understanding that will lead to a physical cure, by first identifying the illness accurately and safely.
  • Serious medical research into the underlying causes of the disease,specifically enteroviruses , including mitochondrial dysfunction, channelopathies, genetics, etc, as well as  medical recognition and physiological identification of symptoms, not commonly validated or currently properly recognised : the mechanisms whereby people become paralysed,  investigation into the stroke- like and seizure like episodes, the underlying physiological cause of the continual muscle spasms people experience, the underlying reason for parasthesia and hyperesthesia, the underlying causes of the environmental sensitivities experienced: noise sensitivity, light sensitivity, chemical sensitivity, food and drug sensitivity, movement and motion sensitivity and how to treat them so that people are not left with nothing as is currently the case. 

It is time to offer a genuine new way forward .

Greg & Linda Crowhurst

This Must Stop

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 the NHS, leading to mismanagement and deterioration in genuine ME sufferers.

The ongoing potential to mistreat ME patients, under the banner term “CFS/ME” whose only likely option still is a fatigue clinic with a psychosocial pathway - or no treatment whatsoever -often the safer route, especially for the most ill.

The ongoing prejudice, especially in neurology which blocks deeper investigation, including the possibility of testing for rare diseases such as Periodic Paralysis and Mitochondrial Disease, which could lead to possible treatment and recognition of common symptom pathways.

The crisis looming :

  • as the younger population get older
  • the older population of Severe ME sufferers still suffering after decades of utter neglect get older still , needing medical input for other illnesses , without any clinical understanding of their underlying illness

...with still no understanding, no biomedical consultancy and no medical expertise in ME.


All are currently at risk from unsuitable psychiatric input and harm. A commitment from the government and the NHS to create and see through the provision of a biomedical service and new clinical care pathways, especially for the most severely affected, is long overdue.

Greg & Linda Crowhurst

The MOMENT Approach App

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

Thank you to the British Journal of Nursing

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 proud to have been with the person who needed me, despite the loss and the cost.
My absence, on some small level, was a reminder of the many who could never attend such a wonderful, sparkling gathering, for the environment itself, the noise, the light, the people, the perfumes, the food, the movement, the alcohol, are impossibly out of reach for a person with Severe ME.
I would have loved to attend the award ceremony, the height of my nursing career.
Living and caring as I have for my wife, with an illness profile as great as someone with heart failure, late-stage AIDS, Multiple Sclerosis or a person undergoing chemotherapy - for well over twenty years, I have witnessed unspeakable, intense physical suffering, without a moment's relent, hope of medical treatment or a cure.
When you are thrown in at the deep end of this neglected, devastating neurological illness, it redefines your whole life. In the absence of medical respect, representation and expertise, especially within the profession you love passionately and believe in, you have to speak up, you have to try to forge a pathway through it, to help your loved one and all those who suffer like her.
It opens your heart. It creates a true vision. You cannot daily witness what I have seen, you cannot hear the pain-filled unjust stories that I have heard, nor been gutted by the pain of yet another death, down all these many years, without making a stand, fighting for the truth, challenging the status quo, the misrepresentation and mistreatment that allows the most ill to be completely abandoned and neglected, abused, left to die, horrendously. It is that serious.
The BJN award is about the shining of a light. Last night it illuminated serious neglect. Just being shortlisted has helped raise the profile of people with Severe ME, shining a much needed light upon their abandonment and their plight, greatly inspiring me to never stop fighting for the separation of ME and CFS and the creation of new biomedical care pathway.

Thank you !

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.

Stonebird : an Alphabet for Carers

(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.



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 needs and issues, so that you can care safely for the person, even when communication is difficult or impossible.

Concern yourself with the health and well-being of the person so that you can notice changes in energy and ability to tolerate your presence and the help needed.

 Consciously carry out your actions and care tasks so that accidents and mistakes do not occur and so that you are aware of how the person is in any moment.

Remain calm, even if a problem or crisis arises. Calmness aids right action. 

Creative solutions are often needed as needs are complex and answers not always obvious or easy to find.

Be cautious in your actions around a hypersensitive person, especially when you are getting to know them. Only do what you are asked.

Perform tasks confidently, as fear or anxiety can lead to mistakes and uncertainty.
     
D   

.... NEW BOOK COMING SOON !!!!

Why Greg deserves Nurse of the Year award by Linda Crowhurst



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 me, as many others sadly find, in similar circumstances, but he has also dedicated his life to speaking up for all of us who have  this misinterpreted, misrepresented, mistreated disease, adamant that the truth will be to told in order to get better care and medical services provided.

Unless you live with Severe ME, neglected, mistreated, possibly even harmed by ignorant practitioners, lacking in adequate  or accurate information, in need of very specific, very aware and sensitive help, you are unlikely to fully appreciate how great a task and how massive an effort has gone into all the years of speaking out, representing, researching, creatively expressing the issues, that Greg has done consistently, in order to help us all and truly make a difference.

Caring full time, in itself a massive task in understanding and responding appropriately, few would have the awareness, insight, energy and determination to advocate repeatedly and so consistently on our behalf, with such strength of belief and knowledge.

His ME friendly Stonebird Website and other websites, his free documents and books on Severe ME, his devotion to Severe ME, highlighted by the Gibson Inquiry, the Gibson and  EAME surveys, his massive and continued Contribution to 25% Severe ME Charity, his political responses, peer reviewed articles and continued solid stance on Severe Myalgic Encephalomyelitis and the need for a biomedical not psychosocial response spanning two decades is frankly awesome and should speak for itself.

http://www.stonebird.co.uk/severemebook/severeme.html

A Life Diminished

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,
with crass ignorance
And deliberate
carelessness 
or abuse of power and might
or simply, just by being in the room with me now,
in the wrong moment,
in the wrong way,
at the wrong angle,
without realising the danger
at hand,
till I am left weeping
and diminished,
my soul crying for mercy
and tattered
from decades 
of medical neglect.

When I first became ill

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 as if I had entered into a new reality where I was now aware of the sensations of the inner working of my body and I could not escape from this agonising constant pulsing of being, which now had invaded my awareness and was harming me and agonisingly painful.
I had to learn how to become aware in new ways of my body, inner awareness so that I could hope to bring healing and transcendence to my being. I was bombarded also in the stillness of my body with the constant activity of my mind, going through my past, trying to make sense of my present.
Had I somehow caused this to myself through unforgiveness, hurt, anguish, undealt with loss? I went through my life in my mind, I tried to forgive, release, let go, of all past hurts. It helped me emotionally, but still the body continued to hurt and not work.
I eventually came to realise that thinking about the past was unhelpful. Wanting what could not be was unhelpful. Expecting immanent wellness was unlikely. Realising that my will alone could not make me better. Positive thought and attitude would not take the physical pain away or the multi- system dysfunction that was causing me havoc in my body. Interestingly at this time I saw a homeopath who told me that I was very seriously ill, whatever anyone else said and to hold on to this knowledge. He confirmed for me what I knew already, yet what was being denied by the medical profession. There was something very physically wrong.
This was something horrendously severe, that had affected every level of my body and my mind alone was not going to, could not make it well, no matter how much I wanted to be well. So what was the best way to live in this physical nightmare?
It had to be through living in love, through lifting my thoughts to a higher place, through sending love out to the universe, hoping love might return and bring upliftment , healing and comfort. Prayer soon became the true focus of my life.
Linda Crowhurst

How could the IOM have got it so wrong ?

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 to review 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 has not attempted to separate out into ME, CFS and Chronic Fatigue, encompasses a vast range of patients. All the time that ME, as defined by Ramsay and the WHO , is confused with Chronic Fatigue, or is ignored or wrongly misrepresented as Chronic Fatigue Syndrome, there will continue to be little hope of proper medical investigation or representation.

Simply put, if you look in a box where CFS, ME and CF are all muddled together, with no clear distinctions made in the research, you will only find more of the same : lack of clarity, ambiguity, uncertainty and confusion alongside a gross misunderstanding of Myalgic Encephalomyelitis.

If the IOM had wanted to identify ME as a distinct and clear disease, it should have looked outside the box.

It should have considered what is missing, what could be new and true, what patient experience and evidence is available to illuminate the lives , symptoms and illness experience, especially of the most severely affected, in whom the illness is most fully manifest.

The IOM should have started from the fullness of the illness and come up with something new fresh and hopeful, not more of the same tired old rehashed information, with limited symptom recognition, purporting to represent people with ME yet spectacularly failing to do so, especially the most ill whose circumstances are so dire.

If you do not have the right task, you will not come up with the right answers. Surely this is self evident?


STONEBIRD
Greg Crowhurst
March  2015



Brain Fog, not just the odd word forgotten.

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
In a brain fogged mind
Of clarity, vision, beauty,
In what was once a multi-coloured, multi-layered, deep and delving
Dynamic, active, engaging place.
Now gone to sleep in an unstoppable snow storm,
Barely waking now,
Just silently empty
And unexpectedly transformed

Into nothing. 

Linda Crowhurst