I HAVE A DIAGNOSIS OF VERY SEVERE ME, YET HOW CAN I TRUST THAT DIAGNOSIS ?

To engage with anything or anyone on the outside, I have to get through an unimaginably solid
barrier of intense, internal burning pain, that consumes all my muscles and expands outwards beyond the physical limitations of my body, so that no contact is bearable or pain free.

Not only do I have to endure the intense, overwhelming, never-ending burning, but also the interminable throbbing, itching, crawling, stabbing sensations, the intolerable, continual emptying weakness, the blank, numb, nothing that consumes every part of me.

My mind is a solid fuzz of darkness where thought and colour and flowing ideas might live; once lived, yet now need to be dug out, if at all, from the mine of fog that fills it.

My eyes, too blurred to focus clearly, the muscles dancing around when they should be steady or staring, immoveable when they should be able to contract and focus, make my vision darker, smaller, fuzzy, diminished in perception and clarity.

Movement, then, around me causes total mind confusion, disorientation, difficulty in processing; can knock my muscles into total body paralysis, bizarrely, excruciatingly and unpredictably.

I live in an unsafe world. My world is mostly just one room.

That room is my sanctuary, yet it is still not safe from outside invasion or internal assault by the slightest sudden movement or sound, both loud or quiet - all diminish me, attack me, hurt me and can reduce me to intensified agony and inability to move or open even my eyelids.

The room must be heavily guarded by sound- reducing, double glazing and thick, light-reducing curtains, that shut me further from the outside. Bright light causes indescribable pain and agonising after images that simply don’t easily fade away. My body flows continually in and out of complete to partial body or muscle paralysis. It never fully leaves. It destroys my life, in unimaginable ways.

I don’t want sympathy. I don’t want sainthood. I certainly don’t want pity. I am still me on the inside, even if I am buried deep within myself and unable to express any or all of me.

What I want is understanding and sensitivity; recognition for my reality; compassion in relationship; proper physical explanation of each symptom; medical help, based on sound physiological knowledge, not just guesswork; a safe path to take; living hope.

I don’t want to be continuously buried alive in a sea of misdirected words, a generalised ME/CFS label with AKA Myalgic Encephalomyelitis incorrectly attached, though it is not AKA at all, describing a non-disease, into which many poorly diagnosed conditions unfortunately fall, which may or may not be what I have - that only really primarily recognise fatigue, sleep disorder, chronic pain.

These are so minimal in identification and bear little resemblance to what I go through, minute by minute, second by second, moment by moment, in a complete nightmare of unpredictable torture; assaulted by sound, attacked by movement, paralysed by perfume, inexplicably unable to move just from sitting or lying down, with a heart rate that regularly falls to 23 beats a minute.

How scary is that?

Words can have such a bland affect, they can under-describe or dismiss the true reality or severity of experience. Words can mis-label, can be omitted, can make something tormenting sound almost harmless and insipid.

I have a diagnosis of Very Severe ME, yet how can I trust that diagnosis? Why would I want it at all, when it has left me tormented, mistreated for decades and irreparably harmed in the past, because the underlying physiology had not been adequately sought or understood?

It explains nothing of my true symptom experience.

The words are easily misused to mean a variety of different conditions, not like me at all, when you look at the finer detail of my experience.

NICE is seemingly trying to remove even the words ‘Very Severe’ from recognition. Yet those two extra words are essential, for at least they try to convey the seriousness and intense severity of this incurable disease and the extreme nature of symptom experience. How then can anyone be safe, then?

And how can I ever get even the minimal safe treatment that I require?

How can anyone be trusted, when the disease I have is simply not recognised, owned or clearly labelled as such by the medical community? But rather described as a vague idiopathic fatigue condition, that ignores many of the symptoms] and is therefore open to psychosocial misinterpretation and mistreatment?

So how will I ever know the truth? It is just as much needed today as it was on the first day of my illness.

That is over a quarter of a century ago. And for many others, even longer. The ME community are surely well placed to comprehend what abandonment and neglect over decades truly feels like?