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Butterfly




I am a broken butterfly
My wings no longer flutter
Or lift me from the ground
What remains of me
is
Limited
Reduced
Inaccessible to most
The world
    too big
    too busy
    too noisy
Crushes me with its
Carelessness
It's neglectful ignorance
It's persecutory hostility
And it's lazy incompetence
Am I then too broken to dream
To hope
Not to despair
Some days
I just don't
Know the answer.

Paralysis : so much more than not being able to move.

Stonebird

It sweeps in, it crushes all strength, flows up through your hands and feet, through your limbs and into your back and your chest, your throat, your face, your eyeballs, your mind.

Experienced from the inside, transient awake paralysis is a brutal nightmare forced upon a body that the moment before could, to some extent, move. 

It intensifies the pain, already present, increases the inflammation, yet it also numbs the senses all over your body, it steels your proprioception, so that your awareness of various parts of you, just disappears with no boundary.

It blanks and paralyses your mind, it stops your thoughts reaching your mouth, it stops your mouth from speaking anyway,  it numbs your tongue, it paralyses your throat and clenches your jaw, so that eating is impossible.

It swells your stomach and stops it emptying, it presses on your diaphragm so that breathing becomes a struggle.

It increases your hypersensitivity on every level still further, so that every torment is increased a 100 fold.

It causes your body to overheat and sweat profusely.

It causes massive indescribable head pain, eye pain, headache to intensify still further and it makes contact and interaction a nightmare of agony and complexity few, except those who might already know, can actually imagine.

Fatigue : a slap in the face and an insult

Greg & Linda Crowhurst
September 2014
(Published in the ME Global Chronicle Oct. 2014)

The situation regarding Severe ME is so dire as to be almost incomprehensible. You have to ask : why are people not bending over backwards to help those who have been pushed, through unimaginable physical suffering to the very edge of society ?

Imagine if cancer was treated mainly with psychiatric therapy while those with malignant or terminal cancer were left at home with no treatment, help or support, to die, their serious disease ignored.

There would be such an outcry !

You do not get that outcry with ME.

Why ?

The seriousness of the illness is no longer understood or adequately represented. Myalgic Encephalomyelitis”, the neurological disease, has become hopelessly lost in a sea of poorly identified fatigue issues, in which Severe ME barely registers.

After three decades of psychiatric misdirection, a bewildering array of inappropriate and vague terms : “CFS/ME”, “CFS”, “ME/ CFS”, even “Chronic Fatigue” are routinely used to mean ME.

The terminology leads researchers and clinicians to focus on fatigue, rather than ME.

It shows how little comprehension they have of the true reality of the illness.

It is unrecognizable to us, the way ME is generally described, a fanciful view that is not real or based on lived experience. How can there ever be real progress all the time ME is so poorly defined as to be unrecognizable?

Practitioners and services, in our experience, have no idea how to relate to people with Severe ME; they either ignore, downplay, neglect or overlook the most serious symptoms, the complex hypersensitivities, with frightening consequences. How can it be that the more severe and extreme symptoms, like paralysis and muscle spasms are constantly ignored or downplayed by medicine and research ?

To try and engage with a medical profession, that has not engaged with the medical truth of ME is terrifying the more ill you are .

The use of any term, that attaches the modifier “fatigue” to ME, is wholly inappropriate, especially in Severe ME.

Fatigue for my wife, as someone who has suffered from Very Severe ME for over two decades, is the least of her worries. Here is what she has to say about this derisory term :

It is not fatigue for me, it is paralysis : a complete inability to move, think or function

It is not the tiredness that comes from doing things, it is no energy to do them in the first place.

It is not weariness, it is stultifying incapacity and profound disability, caused by multi-system dysfunction on a major scale.

It is like your body has turned to stone and cannot move by willpower, whim or wish.

It is like you are dying.

It is like someone pulled a plug and everything drained away leaving an empty nothing.

It is not even recognizable as fatigue because it is embedded in pain , overlaid with numbness and crushed by paralysis, defied by shaking and muscle spasms.

The more severely ill you are, the less you can find fatigue in the haystack of more serious, severe and ignored symptoms that define your days and your isolation.

I am so very sick of being under-represented and misdescribed.

It is a slap in the face and an insult, a step too far, to be continually told your illness is primarily about fatigue when paralysis defines your days.

Just to be weary and tired would be a miracle.

How can people have an honest prognosis all the time a psychosocial model of interpretation denies the true reality of this serious and life threatening disease , while “being positive” is used to deny the true seriousness of the illness and its unlikelihood of recovery without biomedical treatment ?

How come the psychosocial lobby, in active collaboration with the major ME charities, has been allowed to spread its misinterpretation of ME as chronic fatigue so aggressively across the UK without effective challenge by the medical profession ?

How can there ever be accurate research, when the pool of research patients is drawn from those that who attend CFS fatigue clinics while the most severely ill, too ill to see consultants in hospital settings, are medically neglected and ignored ?

If the most ill dare to engage with a medical establishment which does not understand the underlying mechanisms of their illness, they are at serious risk of harm, even death.

Any Severe ME sufferer will tell you that at the heart of ME there are crippling hypersensitivities which dominate and destroy lives, yet this is barely acknowledged. There is no effort, we are aware of, to create innovative aids to deal with crushing noise sensitivity, for example, for those in too much pain to use earplugs or earphones, or light sensitivity: how to safely help someone who cannot have the light turned on.

That basic thinking is not there yet. There is no highly skilled specialist ME service, to our knowledge, dealing with the moment to moment torment people with Severe ME experience.

Until professionals and clinicians become interested enough, genuinely concerned and knowledgeable enough about the disease, especially Severe /Very Severe ME, there is no hope of an adequate and safe medical service.

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 a voice 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 act responsibly
And treat us properly
For the neurological
Severely debilitating
Physical Disease

That we actually have?

Guidelines on writing and presenting information on M.E.

Stonebird

Focus on Truth at all times.

Be Passionate but be true.

Be very clear what your values are and make sure they underpin every word and have an overarching principle, rather than a relative origin. Do not sacrifice them inadvertently or compromise them. Stay focussed and true. Compromise leads to dilution,betrayal, ambiguity,lack of clarity, inconsistency, stagnation.

Be clear in your purpose, why you are writing and what you want to say.

The credibility and integrity of your document must not be compromised by lack of accuracy. Check your facts, double check, triple check your facts and make sure they are correct.

Approach with humility, acknowledging your own fallibility, admit error and rectify any error where necessary, without delay.

Focus on issues, not personalities, when challenging another view or opinion or making a point. Never attack anyone personally. It leads away from the issues and potentially causes harm and offence. It weakens your presentation and clouds judgement.

Always write objectively not subjectively. Avoid all emotive words, to ensure factual clarity and correct focus.

Never write angrily, avoid self- righteousness. Anger clouds judgement, risks mistakes, lacks focus, may misdirect.

Make sure you know what you are talking about.

Make sure that you say what you mean and you mean what you say.


Make language accessible and easy to understand.

Wanting to be me, not ME

This poem says so much about relationship
 in Severe ME :


Inside I am still me
Somewhere, hidden within
The tattered shreds of my tortured mind
The limp empty, useless limbs
Which lay motionless, immovable, numb, unfeeling,
Refusing, absolutely, to conform with my will,
Portray a statue
Thrown upon its back, helpless, useless, broken, 
Unable to rescue itself,
Stuck in whatever pose, it was accidentally arranged in.
Moving takes time.
How long I cannot say.
My body, bathed in sweat, is far too hot.
Uncomfortably saturated, itching, burning,throbbing,
My skin crawling with irritation and indescribable sensations.
I am desperate to move.
I cannot call out.
I cannot wipe my face, bejewelled with sweat,
I cannot move my twisted body, my awkward limbs,
I cannot help my self at all.
I cannot even think, 
So blank my mind
My head and neck twisted to one side, 
placed at an unexpected angle
To avoid the worst pressure on my skull,
To try and prevent the intense agony from piercing my brain,
From invading my head, my jaw, my eye, my spine,
I feel strangely calm,
Almost peaceful,
My breathing rhythmic with sleep,
Despite my consciousness.
I long to drift away 
back into oblivious unconsciousness,
To rest and wake whole limbed and happy.
It is not to be.
The monster that has taken over my control
Will not let go its clutches,
No matter how hopeful or resolute I am
To defeat it and fly free.
Another day, I wake into paralysis,
My beloved up, long hours before,
Moving in a different rhythm, to a different tune,
Separated by degrees,
From the world we promised each other.
He waits for me to waken
And begin the long process to freedom 
From the prison that my paralysed self has become.
How do I get to the outside?
How do I connect from the inside to the outside world?
How can I give him a glimmer of my true self,
When all inside is broken and disconnected,
Dismantled, swollen, engorged with pain?
Again and again,
I try in vain to listen, to smile, to understand, to see
But how can I be truly loving, present, here, for him,
When every sound he makes attacks me,
Wounds me, knifes me in my ears, my back, my guts?
When every movement, big or small, fast or slow, loud or quiet even,
Confuses my brain and jangles me all over,
Causes me to groan or flinch or shout with irritation,
When my facial muscles are palsied and frozen 
In a blank, empty, impassive expression,
Unwilling to comply with a grin.
When I simply cannot focus my mind, despite my best intention,
Beyond the cacophony of distress, 
Permeating my senses,
From every cell, from every level of  pain, 
From every millimeter of numbness, irritation, weakness.
When my eyes cannot see out beyond the inside,
Through the darkened, unfocused fog and sun glasses
I cannot even see his beautiful face,
His joy, his love, his kindness, his excitement, his tender presence
Or comprehend what he is trying to say to me,
When one word, spoken too enthusiastically,
Will cause me to wince with the intensity of pain it causes,
To my ears, my head, my stomach.
When I cannot interact because the paralysis, still grips me,
Still remains entrenched within all of me,  
Despite it may have allowed me some brief action
Some limited movement,
Before crushing me back down, even deeper, further away, inside myself,
So that I feel like less than a stick-picture innerly,
In a large, misshapen body
Bloated by steroids,
Bound by invisible chains,
An invisible, desolated alien, in my own life,
Always wanting to express and be
Me
Not 
ME.