Care for Someone with
Severe Myalgic Encephalomyelitis
Our Unfortunate Long Involvement with Myalgic Encephalomyelitis
It is well over two decades since my wife collapsed and very quickly became bed bound, in intense, never-ending, off-the-scale pain, with a host of complex symptoms that have never been adequately investigated or explained.
It has taken us many years to try and piece together a congruent medical explanation of her profoundly disabling symptoms, years to try and make sense of the underlying physiology that is causing such immense physical and cognitive devastation.
Unfortunately, it has led to our long involvement with Myalgic Encephalomyelitis.
Being given a Severe/Very Severe M.E. diagnosis, in this country, even by an internationally renowned Biomedical Expert, we have discovered at massive cost, does not mean you get genuine, knowledgeable, medical input, investigation, explanation or empathy; quite the opposite in fact!
You quickly come to discover that the term, “Myalgic Encephalomyelitis”, far from its original meaning as an organic WHO-classified Neurological Disease, with close links to Polio, has been taken over and under psychiatric influence, been misnamed “CFS”, “CFS/M.E.” or “M.E./CFS”.
The extended name has instead come to mean a wide, poorly diagnosed group of patients, some of whom may have treatable diseases and conditions, such as undiagnosed Chronic Lyme, Hypothyroidism, Adrenal Insufficiency or rare diseases such as Periodic Paralysis, all being lumped together, under the meaningless term of a “fatigue condition”.
Due to poor diagnosis and the absence of any identifying, specific test – the VP1 test for enterovirus was abandoned decades ago – there are many different conditions that could possibly be included under the vague terms “CFS/M.E.” or “M.E./CFS”. It helps no one.
The tragic result has been the widespread psychosocial misinterpretation of M.E., with a focus on “therapeutic techniques”, which are particularly dangerous and potentially harmful to those with genuine Myalgic Encephalomyelitis, as this recent GET and CBT Survey shows.
It has led to the extraordinary situation where there is no biomedical recognition of M.E., no biomedical or safe, appropriate care pathway, which could aim to provide more adequate medical input, biomedical support, physiological explanation and full recognition of symptoms, more in-depth investigation of those symptoms, if appropriate, and perhaps a special M.E. crisis advice service, alongside an appropriate biomedical home visiting service, despite the desperate need.
“ME”, widely portrayed as some kind of “idiopathic fatigue condition”, treatable by so-called psychosocial therapies, is now being actively promoted as a mental health condition.
Patients, then, are left extremely vulnerable and unsafe, in a system that focuses on generalised fatigue and does not adequately recognise the underlying pathology of the disease that they actually have.
You have to ask, just what does the term “M.E.” actually mean any more? Certainly not what was originally intended by the early pioneers of the disease.
Over many years we have discovered, to our cost, just how highly politicised a disease M.E. is. The M.E. and CFS confusion is the result of powerful vested interests at work, as I explain in my free eBook Straight-jacketed by empty air.
For us, it has meant experiencing decades of disappointment, misinterpretation, mistreatment, hostility and profound levels of both medical and social ignorance, which have so harmed my wife that she now cannot safely ever engage with anyone, even myself.
She lives in a world incomprehensible to most.
She is unable to see people.
She is profoundly disabled.
She is tormented by every sound, loud or small.
Her suffering, in my experience, is beyond most people’s ability to visualise or comprehend.
She exists in almost total isolation from normality.
It has always been my greatest wish to get her the help that she needs, to find treatments that will end her suffering, to secure adequate, safe, accurate medical testing, to find medical explanations for her severe, incapacitating symptoms.
While still waiting for that to happen, as an award-winning nurse, with decades of experience, I have written several books over the years, on how to approach caring for people diagnosed with Severe/Very Severe M.E., particularly those experiencing high levels of environmental hypersensitivity to touch, sound, light, movement, chemicals/perfume.
Everyone with Severe/Very Severe M.E. and people involved with them – friends, family, carers, doctors, social workers, paramedical staff – need to appreciate and understand just what is going on.
It is critical that those trying to care, develop extraordinary empathy, deep understanding and possess the skill to know how to help in the right way, at the right moment, as I outlined in Principles of Care (PDF file).
People with Severe/Very Severe M.E. are at constant risk of being grievously harmed through ignorance and lack of awareness. That is why I have written these two books: Severe ME: Notes for Carers and Care for ME.
As a carer and as a husband, I wanted to write the best books possible to help people get better care, support and understanding, using a partnership, person-centred model of caring, with a focus on the MOMENT, to maximise the opportunity to meet each need tenderly. Here is my guide to The Paradox of caring for people with Severe ME (PDF file).
In 2015, one of my proudest moments, as an unpaid, full-time carer, was to be third place finalist in the British Journal of Nursing Awards, for Nurse of the Year, specifically for my advocacy work for people with Severe M.E.
The choice you make every moment of every day as a carer is a stark one. Either you give up or you keep going; 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.
Most importantly, never forget that the name of the disease matters – not just the name, but also the interpretation and the meaning given to the name; that matters very much.
Understand why accurate diagnosis matters.
Recognise why neurological symptoms are so important to identify.
After all these years, it is the greatest tragedy that still not enough is being done to separate the disease “M.E.” from the sea of fatigue conditions that it has been so deliberately buried in or to better recognise comorbid conditions and even possible misdiagnosis.
To care for someone with Severe/Very Severe M.E., great wisdom and skill are required.
I cannot stress enough how you HAVE to be fully aware at ALL times just how seriously ill the person with Severe/Very Severe M.E. is; caring for someone at this level of illness, there is no room for even a moment’s complacency.
For much more information on Severe M.E., including a wide range of Care Guides,
please see my website Stonebird.