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So tell me.

A Guest Post by Kara Jane Spencer

Stonebird is proud to publish this stark reminder by  Kara of the the real symptoms of ME and how serious they are.

"So tell me.

To what extremes would you have to push your body, that it would faint and vomit due to the sheer level of exertion you were putting it through?

For my body with very severe ME, the level of exertion which results in fainting and vomiting, is just going to the toilet. Not even walking there, or standing. Being hoisted into a toilet chair and being assisted by carer's every step of the way. That's it. That is my maximum exertion level.

I DO NOT want sympathy. I consider myself fortunate. I have friends with this disease fighting for their lives.

But I DO want awareness and for you to consider the level of dysfunction we are talking about here. Objective measurable dysfunction; heart rate erratic, bp low, temp low, oxygen low, hypoxia, low blood perfusion to the brain etc.

Serious dysfunction from exertion of = Going to the toilet assisted and hoisted.

So tell me: To what extremes would you have to push your body, that it would faint and vomit due to the sheer level of exertion you were putting it through? "

We must unite and stand firm !

A Guest Post by Malcolm

As a UK M.E sufferer you think we would have become immune to it. However as many of us woke to face another day of pain and struggle we could add the familiar sting of media persecution to the list. All the usual suspects are present and correct – derogatory terms such as “yuppie flu”, the obligatory model trying to look “tired” and in need of some good positive thinking. Usually the rage lasts 10 minutes, but the Telegraph has hit a new low with its recent article. 

The last few weeks has seen Lyme disease become the cause célèbre of the press – every local rag scrabbling to find some local bastion of the community fighting this dreadful disease. No questions have been asked, no suggestion of malingering; after all a billionaire has exposed this scandal -  and they as we know are unimpeachable. It is amazing what a well funded PR campaign can achieve in a little over a fortnight. No wonder many in the M.E community wish to jump ship and attain a Lyme diagnosis. Last year my GP suggested I went to see a neurologist to rule out M.S. Having been forced to pay privately he looked at me with pity and said he wished he could tell me he could help but as it was definitely M.E then all he could do was refer me to the local fatigue service where he has never seen a positive outcome.

Has it come to this when I and many others are willing ourselves to have a different illness just to escape the relentless prejudice, misunderstanding and outright hatred we experience daily. Our illness is bad enough, for many it is a life sentence of suffering with no chance of parole.  What is the purpose behind this constant assault upon some of the most vulnerable members of society – we have no glamorous celebrity cheerleader, no money for PR -  many will struggle to keep warm this winter. The media propose a gothic parody of the Victorian asylum – what next ice baths, lobotomy and leeches? Has any illness ever been as vilified as M.E?  In my naivety I volunteered for the initial PACE trial – I informed them that I was an endurance athlete training for 24 hour races – exercise was my life and something had gone badly wrong. Mysteriously I was placed in the “control” group and that was my last contact. Science is based on the willingness, even the desire to be proved wrong -  yet there is something very rotten masquerading as science in the UK, blinded by a death grip on mistaken and outmoded belief.

When prejudice and closed minds manipulate the media history repeatedly teaches us the catastrophic lesson.  Social media has given us some hope and power – look at the outcry over the recent tax credit cuts. We must unite, stand firm and weather what hopefully will be the final storm before hope shines across the Atlantic!

We Survive Another Day

We live in the broken places
Very few know or comprehend,
We live on the edge of life
Not knowing if or when we will fall off
Yet clinging on
regardless of the intense unbearable,
indescribable levels
of suffering
We hold on to all that is good
All that is true
All that is life
And will ourselves onward
Towards hope that seems hopeless
Yet still we demand of it
To come to our aid
Inspite of the unlikeliness
We trust in tomorrow
Even when today is tortured,
Unbearable,
Impossible even,
Yet we do not give in to despair, instead,
Despite our own agony
Or even, because of it
Because we know what most cannot even glimpse,
We hold out invisible hands
And create a network of love
To gently embrace, surround and comfort
Those in desperate need
In the void of clinical neglect
And abject torment.
We will each other on
Where the world has turned its back
And simply has no answers
Nor recognition
As a result.
We somehow endure
And be
The bedrock
Of missing support,
Laced together by love
Reaching out towards the gap between heartbeats,
Praying and asking that
We survive another day.

Please Mr Corbyn

As someone who has fought for over twenty years for a medical service for his wife, as a finalist in the British Journal of Nursing, Nurse of the Year Award 2015, as a member of the Labour Party, I posted a detailed letter, outlining the shameful politics of ME, to Jeremy Corbyn, yesterday urging him, with all the power and passion I could muster to ask this question at Prime Minister's Questions :

"Please can you explain why there is no national or local medical neurological service in the UK for patients with Myalgic Encephalomyelitis (ME), classified since 1969 as a neurological disease by the World Health Organisation (G93.10.3) Tens of thousands of seriously ill patients in the UK currently receive no ongoing clinical support, no adequate investigation, not even a safe diagnosis. Surely ME must be the only neurological, multi-system disease that is not treated with the seriousness and respect that it deserves? Instead patients are abandoned, often for decades on end, without any investigation, treatment or cure, many, as a result, have died an agonising death. People with ME need a biomedical pathway. What will you do to ensure they get it?"

Never give up !

I have fought for so long, but the despair in Linda's face, when we came across this MEA list of UK
"Specialist Services", last night, has gutted me. It feels far too big, the  psychiatrists have comprehensively won the battle to bury ME under a pile of crap called CFS !!!

BUT as Winston Churchill said :

“Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honor and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.”

We FIGHT ON. The psyche's  is an empire built on sand, lies , deceit, manipulation and cover-up.

 I am posting a letter today to Jeremy Corbyn.

http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

All days we love each other

Our world is extreme and bleak
Cracked by pain,
removed by paralysis,
separated by noise sensitivity
We live through it
By trying to connect with each other
In a massively disconnected context
Some days we manage
Other days we miss each other
All days we love each other
That is the truth of this ME.

Decades of medical neglect

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.

ME I choose to survive

While you are getting up and going to work
ME, I am in agony and paralysed
While you are driving around in your car
ME, I am struggling to get my toes to move
While you are wondering which delicious coffee and pastry to try next,
ME, I am struggling to figure what is safe to eat on my sugar free, dairy free, gluten free, wheat free, hydrolysed fat free, alcohol free diet
While you are enjoying a pint or a glass of wine or a gin and tonic or an infinite number of cocktails,
ME, I am struggling to work out if it is safe to drink tap water or bottled water
While you are going shopping for clothes and enjoying the choice of trying on the latest fashion
ME, I am struggling to find any clothes I can wear at all that will not hurt me
While you are splashing on your perfume and enjoying the delights of skin and hair products
ME, I am struggling to find a soap I can use just to wash with at all
While you are laughing, chatting, enjoying the ordinary social banter of life
ME, I am tormented and deteriorated to a spasming jelly by any voice at all that floats across my space, living in total isolation from contact with ordinary people.
While you are going to meetings, spouting opinions, listening to information
ME, I am unable to move or think or connect in any way with normality
While you are relaxing, having fun, enjoying a holiday or a weekend break.
ME, I am in agony, unable to go anywhere or do anything, or have a break from the sheer physical
slog of coping with a body in so much pain it cannot be touched, rest or get comfortable.
While you are enjoying all the wonderful myriad social family occasions that come along
ME, I am the empty gap no longer laid at the table
While you are unwinding reading a newspaper or the latest novel,
ME, I am staring into space, trying to sit upright and avoid becoming paralysed, unable to focus with fuzzy eyes and fogged blank mind
While you, with your health and your options and your opportunities are wondering what to do and feeling sorry for yourself
ME, I have no choices, every connection to normality broken, unable to choose anything except despair or survive
You have a wealth of opportunity every day, just being well
ME I choose to survive but it gets harder every day.

It is so dangerous !

People with Severe ME need this :
The correct information that ME is a neurological disease with multisystem dysfunction, not just some fatigue condition that you can recover from with Cognitive Behaviour, Graded Exercise Therapy or a Think - Yourself- Well course.
Support provided by those who are acutely aware of the physiological issues of ME and the extreme danger of harm and deterioration that can result from any interaction, however well intentioned.
Well experienced, medically aware consultants with a genuine overview of neurological ME and its biomedical implications who will properly investigate the underlying physiology.
This will not happen all the time psychiatric misrepresentation is promoted.
It is so dangerous to think you can engage with people who deny or who do not understand your illness.

Thank you Design Cuts !

I was lying on the operating table this morning, having a biopsy taken on my face - when the surgeon
asked me if I had heard of the Lightening Process for ME !
It was not easy staying still and calm !!! Still it was an opportunity to discuss and hopefully educate the theater staff in Very Severe ME - and how the LP is utterly not appropriate : while the surgeon stitched my face up !!
I didn't even notice the operation, I was so fired up !!!
How WONDERFUL and incredible it was to return home and have this huge framed poster of Notes for Carers delivered ; a present from Design Cuts, the amazing people I buy all my fonts from !!!
https://www.designcuts.com/
(The newly updated website for Notes for Carers is here :http://stonebird.co.uk/Notes/index.html)