The most powerful portrayal of the reality of Severe ME I have ever seen

As a long term Carer for someone with Very Severe ME I have no words to express my gratitude to Merryn's Mum and Sister, for so bravely raising widespread awareness of "Severe ME" , both in the national press and on prime time TV.

To watch this film, to see Clare and Amy fighting back their tears, is absolutely heartbreaking.

To hear their story of dismissal by a Neurologist, who did "not believe " in ME, to hear how Merryn was told it might just be "panic attacks" she was suffering from, to hear how a social worker was actually sent round to check up on the family home; these things should shock you.

The public should be horrified by the way ME is misrepresented and mistreated. By the harm that is being done, by the lives that are being devastated, while the disease, itself, continues to be poorly investigated.

A much needed breakthrough is still nowhere in sight; yet the suffering is endless and beyond description.

It should not be that people have to suffer in the way they do, with the medical profession not knowing how to help them.

This is the most powerful  portrayal of the reality of Severe ME I have ever seen. I am particularly grateful that it mentions Merryn's hypersensitivity.

Hypersensitivity in Very Severe ME is an unbearable torture, as my wife, Linda, explains:

BEYOND BEARING

Linda Crowhurst

When hypersensitivities in Severe ME move from being uncomfortable, variable, even painful to being unbearable, constant and profound, the difference in experience is both unimaginable and to a degree indescribable.

They create an invisible circle of isolation so thick around you, that it feels like a glass brick wall surrounding you, into which nothing and no one can venture without severe consequence and intolerable agony, that assaults and batters your whole being. In this space you feel as if you are surrounded by empty nothingness and there is a complete separation from you and the ordinary world.

One wrong movement, too close or too fast or too impossible to tolerate, for the person with movement sensitivity, one wrong sound, even a whisper wrongly timed, for profound noise sensitivity, one exposure for even a second to ordinary light, for the light sensitive, one whiff of perfume for the person with MCS or a seemingly gentle touch, for the touch sensitive, can throw the whole body into torment and confusion as symptoms scream and explode in your head and body.

And simply go on, seemingly in a nightmare of torment, that lasts and lasts and lasts and creates even greater hypersensitivity and more separation and isolation from gaining even the most basic care needed, let alone social interaction or just pure fun or communication, because any contact or interaction becomes literally impossible to bear.

The world has become incredibly painful and hostile then, as a consequence.

And all this on top of the already complex multi-system dysfunction that affects your body resulting in muscle fatigue, gut issues, swallowing difficulties, bladder issues, pain, paralysis, shaking spasms, numbs and pins and needles, visual disturbance, post-exertional deterioration, to mention only a few.

You are pushed even further inside yourself and away from the world, all that you can feel and see and know is the pain and pounding upon your body. The impact and the affect are hard to realise and impossibly difficult to convey.

The way to interact and help or just be with the person needs total recognition, understanding and compassion. For it is the loneliest of places to be inside this circle of hypersensitivity.

The whole world is very different here. You see and feel and perceive things that no one else notices or even experiences and unfortunately, terribly, they hurt and harm you.

The experience is literally unbearable, beyond bearing and out of the normal range of experience or comprehension.

Yet still we have to bear it. Still, we are ourselves, trapped inside this impossible situation, where the whole environment and everyone in it is a danger to health and a potential for intolerable suffering.

And still we hope for better moments, for an ease to pain and isolation, for a moment of comfort, for healing to happen.

Still, somehow, we have to bear it and get our needs met.