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Very Severe ME is like :

Falling endlessly off a cliff into nothing.

Being assaulted physically inside and outside in multiple ways all at the same time with no relief or escape.

Having the blankest emptiest space in your head where everything beautiful, colourful, creative, every image, every comprehension , every hope, dream, expectation and every possibility is extinguished, except for the dark blank swirling pressure and piercing pain that tortures you.

Having a knife twisted into the centre of your head whilst at the same time clashing pots and pans as loud as possible in your ears so that it jangles round your head for hours and hours and hours after every single noise has gone away, whilst having a massive heavy, hammer repeatedly hit against your head continuously so that you cannot think and you cannot escape and you cannot stop it and you cannot bear it but you have to endure it, with no alleviation or protection from it and no prediction of when it will increase and no knowledge if whether it will stop, going on seemingly endlessly.

Not understanding, not being able to explain, not being able to articulate, not being able to comprehend, not being able to convey, speak, describe, identify the horror of your reality inside and out., the clashing, clanging crashing reality of central nervous system dysfunction causing utterly destructive mayhem in your head and body.

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From "Severe ME" by Greg Crowhurst

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Natalie Boulton’s “Reflections.”

THIS UPDATED BOOK IS alive with the voices of people, some just beginning their journey into Severe ME , others desperately familiar with the neglect and harm that is the general reality of people with Severe ME.

Natalie Boulton won international acclaim and immense gratitude from the ME community for the ground-breaking documentary on the abuse and struggles of people with Severe ME that she made with her son, Josh Biggs. I believe it is not possible for anyone, with any spark of humanity, to watch their intensely moving film,“Voices from the Shadows” and not emerge shocked and outraged . It is a gut-wrenching experience.

Voices From the Shadows is an extraordinary film. The Chicago Sun Times's reviewer stated : “I can’t be impartial about this film, and I can’t conclude my review of it – if this is a review of it – with the customary, balanced summation of why you should, or should not, try to see it. But I can, with total sincerity, say this: if I could make everyone in the world see just one film, this would be the film I’d choose. It’s my film of the year. It’ll be my film of the decade. ”

Gripping and harrowing, just like Voices from the Shadows, Natalie Boulton’s specially written introductory chapter, perfectly sets the stage for the rest of the book in its exposure of the murky background, the politics and the power games that lead to the ongoing denial and negation of people with Severe ME.

It is a great honour to introduce “Reflections”, which is followed by Laura Brown’s powerful, heart rending account of life as a young mother with Severe ME and Linda, my wife’s description of how she lives her life, in constant agony and indescribable suffering.

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From "Severe ME" by Greg Crowhurst

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Reflections on ‘Voices from the Shadows’ after reading ‘Principles of Social Change’ by Professor Leonard Jason. Natalie Boulton August 2013

‘Voices from the Shadows’(1) is a small self-funded film project that grew out of listening to the stories of patients with ME and making the book ‘Lost Voices from a Hidden Illness’.(2) We started gathering material without really knowing what direction the film would go in, but a focus soon emerged after we showed the interviews to a TV producer. He astonished us by saying we had some of the most powerful material he had seen and how horrified he was by the abuse of patients it revealed. Furthermore, he suggested this would be a more compelling theme for the film than ME, which was generally considered to be rather a ‘turn off’. We were quite shocked by his reaction. The interviews had started as an exploration of aspects of the world we live in every day: the world of caring for people who are ill with a misunderstood and severe illness, who often lack support, understanding and informed input from healthcare professionals. To recognize that we were in fact dealing with ‘abuse’ was daunting. We hadn’t deliberately selected these people because they had suffered at the hands of others but, none the less, we found again and again that the experiences recounted to us were almost unbelievably awful, to the point where we reeled away afterwards, barely able to stand or speak or think. How could we hear these accounts and join the string of people who had heard and turned a blind eye?

One of the doctors we spoke to said that there seems to be something about ME that brings out the very worst in some professionals. And certainly, we have come across many accounts of this, particularly from young people. It is something that goes largely unreported and unacknowledged. I had known Naomi for several years and worked with her when she contributed to ‘Lost Voices from a Hidden Illness’, but I had no idea that as we interviewed her for the film she would reveal such traumatic experiences from her hospital admissions and her subsequent treatment. Neither had we any idea of the full horror of Lynn’s hospital experiences, which we felt unable to include in the film because they were so shocking; or B’s childhood experiences at the hands of hospital staff which have left her unable to walk, bed-bound and utterly traumatised. And we knew nothing of Sophia’s articulate defense and expression of her needs and wishes when being committed to a psychiatric hospital, against her will, by a psychiatrist - a professional who was totally incapable of taking into account her informed views and explanations when they conflicted with his preconceptions. This refusal ultimately cost her life.(3)

In the light of such experiences as are told in the film and many other friends accounts, we are left facing the question: “How is it possible for otherwise responsible and caring individuals to carry out such brutal acts - even to the point of initiating actions leading to death”?

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ME : a biomedical overview

SINCE THE EARLY 1990’S my wife has not known a moment’s respite from the screaming, throbbing, itching, symptoms that paralyse, numb, hurt every part of her body; sometimes if I think that if I took on board the full reality of my wife’s suffering I would explode.

She describes how it is :

“Another morning. I lie here in the vastness of agony. There are no words to describe its onslaught. It is intense, all encompassing, everywhere. I am in it and I am it. My whole body lies motionless, impaled upon the pillow, I struggle with my breathing, I cannot move my arms. How long have I lain deep in this posture ? My left leg is outstretched, numbness pervades it. My right leg is bent out at an angle. I cannot feel my toes. My feet and hands pound, in the very centre, a throbbing beat of pain.

How long will this go on ? Hours probably, yet always these experiences lie within me, the pain ever present whether I am paralysed in bed or sitting on a chair. The experience is ever present within me, no matter what my external posture.

My face burns, prickles, throbs too in rhythmic unison. My face is palsied. I cannot even cry out, yet the hurt rages in me and I long to escape from this tormented place. My head pounds inwardly and burns outwardly.

Please do not touch me. The contact will send me over the edge and still I would not be able to move.

My eyeballs throb, my lids are shut, unable to open to the dim lit room which still would pierce my eyes with pain, were they open.

My head pounds too. The pain is even worse in my arms. My arms and chest have melted into one large immense ball of throbbing agony, immobilised my body feels dead in so many ways, only alive to the pain that holds it together. This is no odd occurrence. I return to this place again and again; always impossibly difficult to describe."

The burden on the carer is enormous; not only do you need to be able to grasp the intricate political systems and structures that are denying the one you care for appropriate biomedical treatment, you also need to have a working knowledge of the complex biomedical impact of ME upon the body , which , given that it seems to involve every single system and part , is quite a task.

There is a lot of information available - I have spent twenty years struggling through abstract lists of symptoms and acres of medical jargon, trying to make sense of it all.

I knew I could not make any progress towards safely helping my wife, without a basic understanding of what is going so wrong in her body. Please bear in mind that no one can tell you for sure; we do not yet have a fundamental mechanism to explain what is going on at a molecular, cellular, biochemical or physiological level that can account for the complex range of symptoms in ME, which, as we shall see, include :

Dysfunctional immune system - chronic infections which hardly ever occur in normal people .

Underlying intestine disorders– dysbiosis, gut permeability.

Problems of oxidative stress leading to DNA impairment, impaired proteins and structures .

Faulty mitochondria – shortage of oxygen and energy supply in body.

Cardiac abnormalities, heat defects, heart not being filled completely, too little blood volume, poor blood circulation .

Neurological abnormalities – with studies showing the grey substance or brain substance is reduced. Malfunctioning of short term memory, the recalling of words can be severely disturbed – patients thinking they have Alzheimer's.

Increased sensitivity to stress, disturbance in the hypothalamic -pituitary-adrenal axis, resulting in reduced cortisol (patients with depression have raised cortisol).

Various muscle abnormalities, malfunction at the molecular level of the ionic channels.

(De Meirleir 2013 Is it possible to diagnose ME/CFS ?)

These offer tantalizing glimpses, my experience is that as you begin to unravel one area of dysfunction , slowly, bit-by-bit a useful panorama begins to emerge.

When approaching someone with Severe ME, what do you see?

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The doctor’s dilemma by Dr John L Whiting

THE AUDIENCE I AM principally addressing in this chapter are doctors and other medical practitioners who look after patients with severe ME. The goal in this chapter is to explain what it is like to have ME, and particularly to describe what it is like for a person to have severe ME. In this way, I am hoping that the patient's doctor will be better equipped to empathise with such a patient in a meaningful and substantive manner.

I will begin, for the sake of practicality, by defining severe ME as ME where a carer is necessary or should be present to look after affected individuals.

Having said this, some of the patients I look after do have severe ME, and yet are devoid of the care from another close to them, and truly do live lives of utter misery and deprivation. If such is the case, then the doctor of this patient has the essential responsibility to correct this situation in a manner that is in keeping with the special needs of this patient. These special needs should not only be acknowledged as real, but also respected by the doctor as being of sufficient importance to motivate the doctor into taking corrective action in whatever way is feasible and practical.

These actions should be in the best interests of the patient so that they remain sympathetically consistent with the nature of that patient's illness features and challenges. Given that so little research into this area currently exists, it behoves the doctor to be both creative and to dig deep into his or her medical experience and knowledge to find solutions to such problems as they present themselves in any given severe ME patient. This, in part, is the Doctor's Dilemma.

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From "Severe ME" by Greg Crowhurst

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