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Showing posts from September, 2015

In honour of those who have passed on

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In honour of Lili, Sophia, Lynn, Emily, Alison, Tom......and so many other beautiful, brave souls, who have passed on. Let us renew our efforts to spread the truth of ME, a deadly physical disease.  Armed with the truth, let us do everything in our power to put an end to the psychiatric lies, spin and deceit, that condemn people with Severe ME to a life of living hell, neglect and profound isolation, until they die. Shame on psychiatry, shame on the medical profession.

Terribly Sad News

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It is with great sadness that we announce the death of a very special young woman with Very Severe ME,  the founder of Severe Myalgic Encephalomyelitis Understanding and Remembrance Day. We knew her as Lili. She was a deeply private person.

 The suffering she endured is beyond description and the sweetness of knowing her equally so. It is, we have to say, beyond heartbreaking, to know of even a hint of the agony Lili endured. Paralysis and extreme pain were only a part of the severe experience she had to bear every day: paralysis not just triggered by noise, but also by any effort at all, whether eating or speaking and often accompanied by unconsciousness.

We all, with Severe ME, owe a huge debt to her; it was her unique idea to propose the special day that we all now share on August 8th; it was also her suggestion that the day be recognised on Sophia Mirza's birthday, to remember those who have died with Severe ME and  those that are still living with it.  On that day, we hold th…

Living on the edge of existence

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Living with Very Severe ME
is like living on the edge
of existence.
You cannot plan,
You cannot predict,
You cannot control
your experience,
thoughts or actions.
You live there, in a strange surreal state,
Unknown to most,
Not knowing how or when
You might leave.
Others live here with you
Strangely visible to us
Even from a great distance,
Yet oddly invisible to the rest of the world.
Some leave painfully quickly and young,
Whilst others cannot endure the uncertainty, the isolation, the negation,
nor the multi- layered pain
And choose the moment of their parting,
To silently, let go,
Whilst we look on, helpless
to know how to help
them,
each other
Or even ourselves.
And yet we, remaining, still hope,
For better moments
For healing to somehow magically occur,
Despite the odds.
We hold each others virtual hands
And send out love across the universe
Into the abyss of not knowing,
Praying for miracles
to save us all.


September 25th 2015

Elizabeth D'Angelo : an incredibly talented artist

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Elizabeth D'Angelo is an incredibly talented artist who has a very severe form of ME, making
painting her beautiful pictures a massive achievement.

Hearing how she experiences profound and life threatening transient paralysis, a symptom so ignored and underrepresented as part of ME, Linda and I were deeply moved by her plight and need to fund treatment and care.

I have built a special Stonebird page to highlight her work . Please visit it to find out more about Elizabeth's magical pieces and how you can help her raise much needed funds through her art shop.

http://stonebird.co.uk/Beth/index.html

Severe ME on a summer's day

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Showing the horror and isolation of Very Severe ME, through the contrast between a beautiful late summer's day and the darkened bedroom where my wife lies paralysed in utter agony, as she has done for the last two decades.

Are the sick, housebound and carers part of Labour ?

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Jeremy Corbyn and the Labour Party are accused this morning of "being a party without a point, led by a leader without a cause".
http://www.theguardian.com/politics/commentisfree/2015/sep/16/corbyns-labour-is-a-party-without-a-point-led-by-a-rebel-with-a-cause

Jeremy Corbyn is 30 years out of date, say the Guardian. He needs new ideas.

They are right ! As I have commented here before, Labour has, to our disgust, these last two decades,  completely brought into the "nonsense" that is austerity, with disastrous results, especially for the sick and disabled. http://www.theguardian.com/business/ng-interactive/2015/apr/29/the-austerity-delusion.

It is nakedly obvious that Labour  needs new ideas !!

I hope they are developed, but not, anymore by Destructive Vested Corporate Interests.

I hope they emerge, like fire, out of yesterday's 40 000 questions: from the ones who know best.

Jeremy Corbyn has inspired me to join the Labour Party.

Today I received my first invitat…

This video could save your life !

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My heart goes out to anyone newly diagnosed with "ME", Myalgic Encephalomyelitis, for you are instantly thrown into a wilderness; a barren, terrifying land populated by rogues, charlatans, scoundrels and  tricksters, who will do you enormous harm, if you let them.

Their clamoring nonsense,  to exercise, to take brisk walks, to push yourself through the illness and so on, or pay for their great "cure"  are almost guaranteed to make you much worse, they could even confine you to bed , with multiple symptoms, for decades.

To save you from disaster, you need  wise advice and quickly. I can think of no better resource than Sally Burch's excellent video presentation; it could, literally save your life.

As Sally explains, the advice that you need, right here, right now,  is most likely to come from fellow patients, rather than from the medical profession.

I have been caring for my wife with very Severe ME, for more than two decades. I have to say that it took me at l…

If I was elected Labour leader today...

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The UK "Welfare System" stinks : nearly 90 people a month are dying after being declared "fit for work", while seriously ill patients, like my wife, who has very Severe ME, are just being left to "rot" in agony for decades, with no investigation, help or treatment  !

If I was elected Labour leader today, I would like to know:


Why are all public services being re-engineered for the benefit of private capital ? (Monbiot 2015)Why has "Big Society" become  "nothing but  a cover for privatization of public services … a money-spinner for the city and the private care providers" ? (syzygysue 2011)Why are there such significant links between the British government and the American healthcare insurance business ? Why   has a philosophy of disability denial has been thoroughly  adopted by the DWP ? (Stewart)Why is  the welfare state"being dismantled and rebuilt as a machine to manage and discipline the workforce into accepting precarious lab…

A vicious attack.

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Recently I was subjected to a vicious attack from a close family member, for my commitment to Linda.
I have lived from necessity, in almost total isolation, for more than two decades. Cruelly, that can be misinterpreted as not caring about my family and relations. If ONLY I could visit, attend funerals, weddings, meet up, go for a drink, go on holiday !!! How it hurts, that I can't. This is my wife's response , it barely touches upon the fullness of her symptom experience : “When will people get what it means to have profound noise sensitivity, how its not just a nuisance or an irritation or an inconvenience, but life threatening, terrifying, horrendous and uncontrollable ? When will they realise that a sound, any sound, loud or small, has the power and the potential to harm me, not just for a moment, but fundamentally ? When will they understand that noise tortures me literally, not occasionally or sporadically but every single day I am paralysed by it ? Let me spell it out f…

Walking Away

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Severe ME :

It seems too complicated,  too much effort,  too bizarre.

It is unbelievable, it is not possible to comprehend, empathise with or even recognise the degree of suffering because it is so vastly out of reach of the ordinary person's experience or interest even.

How do you stay in touch meaningfully with a person who cannot bear your physical presence or converse in two way conversation, who is allergic to your perfume on your body and your clothes, who cannot tolerate physical contact because of touch, pressure sensitivity and intense indescribable levels of pain?

Who lives in darkened spaces, wears dark glasses indoors and cannot bear the ordinary light of day?

How do you convey your inner reality, the complete emptiness of your thought,your inability to answer questions because you simply cannot find the words or the images in your mind?

How do you explain that the simplest noise, a cough, a laugh too loud, a certain tone of voice, a phone ringing or a movement or qui…