I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years. The personal cost to us both because of M.E. has been enormous.
Communication is broken on every level. As soon as she has spoken, she forgets what she has said.
If I speak or ask a question it can cause unimaginable confusion and head-pain, shaking spasms, and deterioration.
Thoughts and memories are mostly beyond access. I must represent her and speak for her whenever the need arises.
Literally everything hurts her and risks deterioration to partial or total paralysis. One wrong movement or noise and the whole day is ruined before it has begun. People simply do not understand.
Who can possibly imagine living in such an assaulting and broken world for decades, without adequate investigation, care or support?
We receive no support from the Church or local community
We have had been forced to live below the poverty line
Society has lost out on our professional skills (I am an award-winning Nurse, my wife is a qualified Social Worker, Counsellor and Teacher)
We live in almost complete isolation, as my wife’s agony and hypersensitivities are so intense, that she cannot bear contact or interaction
We have not been able to have children of our own
I was in my 30’s when my wife became ill, shortly after we got married, I am now in my 60’s
We were both highly respected professionals, but I have openly been called a “waste of space” as a carer
My wife’s profound suffering goes unrecognised and ignored as if she does not exist
Nieces and nephews have grown into adulthood, married, had children who we do not know and who do not know us
Parents have got old and people have gotten sick without being able to visit them even when dying or to attend their funerals
We live in a hamlet, four miles from what is regularly voted the best beach in England. My wife has never even seen it, let alone put her feet in the endless sand, felt the sea splash over her toes, heard the pines whisper above the dunes.
Every aspect of care, including how and when I move, how and when I act, how and when I speak, not just in the room – for it still has impact in any part of the house – needs to be carefully thought through and brought into my awareness.
We can never do the things other people take for granted, like:
go on holiday
out for a meal
a coffee at a cafe
to see a band
for a walk together with the dog
play games, like badminton, tennis, or volleyball
walk hand in hand
have dinner parties
go to church, although our faith is immensely important to us
I have had to learn to take a Moment by Moment approach, to ensure the need is met in the right moment in the right way.
This is much harder than it sounds and needs the right attitude, a person-centred, partnership approach, understanding and focus.
My wife cannot:
read a book, play guitar, study or, learn
listen to the radio
follow conversation or engage in normal two-way conversation
have anyone in the house due to perfume, noise and movement sensitivity
tolerate virtually any contact at all
have anyone making noise in the room with her
bear even the simplest thing like having a cuddle or holding hands
find rest ever, for rest increases her physical suffering
Our days are spent, without exception, struggling to cope from moment to moment in the most awful suffering anyone could imagine; except you couldn’t possibly imagine just how bad it is.
People I have known, dying of cancer, have still enjoyed a better quality of life than my wife. I simply cannot bear the thought of anyone else with M.E.:
having to endure the agony, the mistreatment, the abuse of power, the misrepresentation, the incompetence, the ignorance, the denial, the lack of accountability, the not being able to access safe, aware, medical advice or tests that would help show up the physiological dysfunction, the physical harm, the ongoing suffering that has no end in sight, down all these many years.
having to cope, as we have, somehow, from the devastating consequences of wrong treatment that caused an irreversible deterioration.
having to fight, as we have, every step of the way against the Establishment’s entrenched psychosocial mind set.
It is surely time for a quantum-leap change in attitude towards identifying, investigating, testing, diagnosing and supporting people with M.E.
It is surely time to stop using the label M.E. to mean anything other than the specific disease Myalgic Encephalomyelitis, classified by the WHO as a neurological disease and with multi-system dysfunction.
It is time to stop the misuse of the name Myalgic Encephalomyelitis to mean an umbrella term, incorporating a wide range of unidentified conditions and illnesses including mental health conditions and/or those either referred to as idiopathic chronic fatigue or medically unexplained symptoms (MUS).
It is vital that those who are most ill – especially the estimated 2% of M.E. patients diagnosed with Very Severe M.E. – are recognised, kept safe from wrong treatment and misinterpretation, protected from further deterioration or needless suffering, and cared for in the most appropriate way.
It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!
The psychiatric abuse of Children with ME : some notes from the literature Greg Crowhurst 19 th August 2011 It is not that easy gathering together the information on this subject; yet it is so important ! The quotes below are the result of a lengthy search I have conducted. All the material is publically available, I have tried to follow copyright restrictions where stated. 1. “The number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year. Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity. “ When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do. Leanne was sent home with no treatment and the consultant reported her mum to social services. A week later a social worker arrived on their doorstep in Coatbrid
Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS. Having spoken up about and raised awareness of the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person. Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely. Information, therefore, should be provided to the person concerning the