Care for Someone with
Severe Myalgic Encephalomyelitis
“If you want to know about the reality of M.E., in all its aspects, if you want to understand the environment in which M.E. grows and its sufferers are persecuted, read this Handbook. Greg Crowhurst’s book is of immense value, it’s a holistic book, a total book which looks at M.E. from the focused pinpoint of the sufferer while rising above the immediate physical problem to reconnoitre the surrounding landscape.”
Martin Walker, author of SKEWED: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and needles and mobility problems.
It has taken us years to try and piece together Linda’s medical history to try and make sense of what has gone wrong. Unfortunately, from the beginning, Linda was exposed to disbelief, negation and psychiatric interpretation by doctors who did not recognise her symptoms and wanted to treat her for depression; who simply did not believe she could not stand up, could not walk or dress herself.
It took four years to get an accurate diagnosis by the late Dr Betty Dowsett, who was running a free clinic at the time.
Linda, suffering extreme pain in every part of her body, quickly developed transient paralysis and a host of other severe symptoms including acute noise and light sensitivity, chemical sensitivity, numbness, extreme pins and needles that would not go away, swallowing difficulties, muscle dysfunction, extreme head pain, muscle spasms, temperature deregulation, nausea, gastric issues and food intolerances; there has been no relief for almost two decades.
Unfortunately, there are few Consultants who can accurately diagnose M.E., or even begin to comprehend Linda's complex and tormented reality.
It has always been my greatest wish to get Linda the help she needs, to find treatments that will end her suffering and adequate, safe, accurate medical testing and explanations for her severe, incapacitating symptoms. Unfortunately, we have not achieved that - despite our best efforts.
Linda's health has deteriorated in recent years, through ignorance, wrong treatment and excessive environmental noise exposure. She lives in a world that is incomprehensible to most, unable to see people, unable to function mostly, tormented by every sound loud or small, living in almost total isolation from normality and unable to engage in society.
When she first got ill there was little accurate information about the severely affected: people, as now, were being wrongly interpreted as having a mental health issue rather than the devastating neurological disease that M.E. is. Linda, like so many others, has been badly let down, time and again, misinterpreted, misrepresented, mistreated. The 25% M.E. Group remains the leading support for Severe M.E. sufferers.
Over the last twenty-two years, we have seen the psychiatric lobby go from strength to strength, setting physical research back decades. The result is unnecessary suffering, no treatment, hopelessness, the negation and marginalisation of so many who are physically ill and disabled by M.E.
Today the situation is little better than when Linda first became ill - the focus is still upon fatigue, and the wrong use of the term CFS to mean M.E. is deeply entrenched.
Four years ago Linda was badly harmed and traumatised by professionals who did not understand Very Severe ME; she has still not recovered. This is why it is so important to inform people, to let them know what it is like, to recognise the symptoms, to understand the complexity of supporting and helping someone with Severe M.E., to realise that M.E. is not principally about fatigue, to raise awareness of the need for proper medical risk assessment and knowledge of the potential harm that can be done to people if treated wrongly.
M.E. is a highly politicised disease. Politics matters. Vested interests are heavily behind the M.E. and CFS confusion.
The name matters. Accurate diagnosis matters. Neurological symptoms are important to recognise. People are being harmed, neglected, denied and are dying from M.E. because not enough is being done to raise awareness of its truth.
Everyone with severe M.E. and people involved with them - friends, family, carers, doctors, social workers - need to understand what is going on. Everyone with M.E. needs information and awareness.
Everyone with M.E. needs to take responsibility for speaking up louder about the shameful situation, the lack of adequate medical care that is on offer currently, and they need to understand why it is like that.
People with Severe M.E. need the right support, need to be understood. They are currently at huge risk of being harmed through ignorance and lack of awareness.
I may be a lonely, isolated, impoverished carer but I have never ceased to dream, to believe that I can make a difference by speaking out, by refusing to be silent about the suffering and oppression that people, especially those with Severe M.E., suffer.
As a carer, with qualifications in nursing, as a husband, I wanted to write the best books ever, on the personal, medical and political reality of Severe M.E. - and how to survive it.
Last year I was a finalist in the British Journal of Nursing Awards.
The choice you make every moment of every day as a carer is a stark one. Either you give up or you fight, either the person you care for is left with nothing or you bring life and hope. I hope that is what the books inspire you to do.