TORTURED BY THE SIMPLEST interaction, normality is beyond people with Severe/Very Severe ME.
The risk is great; those who would help are often the cause of harm and deterioration, through their lack of awareness and understanding.
My new book, "Severe ME Featuring Justice for Karina Hansen" a massively updated and expanded version of my first book- this time featuring the voices of people with Severe ME, Carers, Advocates and Professionals from all around the world, is written to minimise that hurt as much as possible.
You need to understand how much pain you can cause, when even a whisper can drill into the person’s brain, sending sharp shards of pain crawling round their head , when any noise can be a torture that makes the person feel like as if they are being hit repeatedly with a sledge hammer.
My wife writes :
"You need to understand why you can speak to them but are tormented by the painful sound of their voice and the inability to process and understand their reply.
The true reality of ME is bizarre, disturbing utterly horrifying and frightening as you descend into physical and mental chaos,tortured by everything. I doubt you can comprehend it even if you wanted to. There is an impossible gap between your reality and mine. And that is why I weep.”
Your approach and understanding can make such a difference. You can be a lifeline, a true support, an advocate, a help. Or you can just be another part of a tormenting hostile environment, alienating the person still further, inadvertently adding to their discomfort and neglect.
For more details please see :
Let me be honest, I do not have any optimism for people with Very Severe ME . We are in an ME minority.Despite 20 years of severe illness and pushing year in year out to get change, raising awareness of the truth, showing what real ME is like,trying to combat the psychosocial myth,the state of ME services in the UK is frankly nowhere. And I no longer have hope that I will ever get a genuine medical ME consultant who knows more about Severe ME than we do.
There are, let us face it, no NHS ME consultants separating ME from CFS that I know of and not colluding with the psychosocial lobby on some level. There is no one willing to visit at home that I know of without huge cost. I am frighteningly ill and so tormented by noise and paralysis, pain and hypersensitivity that I cannot hope to travel to a consultant. But then why would I even if I could? Please tell me there is real help out there.
Please tell me that someone can help me with my noise sensitivity which is a profound assault on my existence.
The problem is this. If you live in ME world, you can find some sort of hope hearing about various pockets of people doing small research projects, having particular ideas about what might be going on.
You can feel excited, pleased, hopeful, that in the USA Dr Chia is looking at enteroviruses or Peterson is treating with ampligen. The people who see them are lucky.
You can hear about trials for rituximab and many people are relying on it as a treatment for the future. You hear about patients up in arms demanding that the USA adopt the Canadian Consensus criteria, all coming from fear that they will lose something.
But what is there to lose when nothing has been provided really and what you ask for is so little it will not even separate out fatigue from ME ?
When the CCC will not help the most severely affected one fig ?
How can that give me hope here in the UK where everyone is colluding with psychiatry and compromising ME away and me with it?
You might be fooled into believing there is movement in the right direction, that somewhere else in the world there is real research and maybe a few genuinely caring true specialists. But then you look at your own life.
You see the actual daily reality of your own existence and it all becomes a nonsense.
I am tortured into total isolation, tormented by every normal thing virtually, harmed and traumatised by people who said they could help make me better, then did the opposite and blamed me.
I am damaged and distressed and traumatised by wrong treatment, the world gets smaller and trust is a word that loses meaning realising it is safe to trust virtually no one.
What real hope is there for someone like me when :
•I cannot tolerate physical contact?
•I cannot bear a needle or injection anywhere in my body?
•I cannot do things repeatedly?
•I cannot be in any social place where other people are at all?
•I cannot tolerate background sound?
•I cannot bear the sound of water or peoples voices or banging or engines or any electrical or repeated sound.
•I cannot have visitors.
•I cannot bear to be near people or listen to them or watch them move?
My stomach paralyses and my guts spasm and all my body muscles tremor then shake when any noise hits me unexpectedly?
My hypersensitivity increases till I am wracked with the agonies of hell at any moment of noise invasion?
I cannot use the phone?
I cannot have two way conversation with any information because I simply cannot understand it and worse it will cause me to deteriorate?
Any movement in front of my eyes or past me causes me to scream with irritated agony and confusion it is so disturbing to my head?
So how can I see a consultant?
How can I get the investigations I need?
I have had people come here in the past. I have fought to get a service, but what I sadly got instead harmed me and left me traumatised, distressed, physically deteriorated, battered and unable to trust anyone, with no hope and misrepresented inaccurately.
We have no more money for private treatment, the only hope it seems. But even that is fraught with danger.
How can there be any movement forward all the time the real people with ME like me, are being shut out from proper medical treatment and genuine investigation and the experience is just not there in the medical profession to help us and psychiatry dominates and those who should be speaking up and be representing us simply are not, whilst pretending that they speak for us ?
How can there be any movement forward all the time ME slowly being taken over and represented as a fatigue illness ?
How can there be any movement forward all the time there is no neurological specialism despite its classification by the WHO as a neurological disease. We are badly let down by neurology.
How can research hope to get a cure all the time the worst affected are simply ignored, overlooked, too difficult to help and too complex ? Left to die or conveniently kill themselves.
What else is left when your world becomes a daily torture?
Me,I want to live, but more than that I want a proper medical service with proper criteria that identify my illness and proper investigation of my paralysis and extreme noise sensitivity and other very severe symptoms.
I want accurate and adequate medical explanation, as do many, not just being fobbed off and left to whither away in torment and struggle on.
I want proper treatments and monitoring, suitable sensitive aids and equipment,awareness and understanding. Respect.
I want knowledgeable medical professionals here in the UK, not fatigue doctors and CFS clinics and CBT and GET. No more denial I say. No more neglect. No more pretence. No more collusion. No more collaboration. No more compromise.
It is my life you are compromising away by your complicity with fatigue and psychiatry. I say no more.
No one is currently doing enough. And the worst are the compromisers who compromise my life down the slippery slope of non existence by collusion and complacency, ignorance or unawareness. They are too many.
I for one have had enough of all the pretence. There is genuinely in my opinion no hope till people stop compromising and start separating ME from fatigue.
Linda Crowhurst December 2013