This is why we are all missing
Today is a day to raise awareness of the millions missing from everyday life due to the disease Myalgic Encephalomyelitis. It seems to me that the reason this is so is because of :
- the missing medical input
- the missing medical respect
- the missing truth of this disease, which has been deliberately wrapped up for far too many decades in a label of fatigue packaged by a powerful psychiatric lobby, to mean something very different from the incurable Neurological Disease that ME actually is.
What is missing from my life and so many others, is a specific test to identify my illness, even though one was developed in the 1980's, now abandoned, with nothing better on the table, allowing enteroviral ME to slip into the annals of history, with those suffering from it too ill and overlooked and dismissed to mount an effective challenge.
What is fundamentally missing, in the absence of this test, are specific and safe, reliable diagnostic criteria, adopted universally, to ensure as proper and safe a diagnosis as is possible, that will identify my illness specifically.
Without this, the information needed to offer any adequate treatment pathway, that would be safe for people with the disease or provide accurate insight, is utterly lost.
Instead you have a wide range of illnesses and conditions, psychologically triggered, as well as environmentally and virally and bacterially triggered, all needing different approaches and treatment pathways, yet all wrongly lumped together and mislabeled as one illness of unknown origin, with a range of different labels, all linking the word ME to fatigue, leaving people suffering and inadequately identified and dumped in a health void, where they are being misinterpreted, mistreated and neglected or harmed.
What is missing is an ME Centre of Excellence , knowledgeable aware medical input, investigation and specific, relevant support.
What is missing is the interest and the focus on the actual disease that was identified by Ramsay originally and protected by people like the late Betty Dowsett.
What is missing, but should surely have been possible to create by now, is a biomedical pathway and a health service that actually treats my illness and acknowledges and explains my symptoms and safely treats me.
What is missing is a universal cohesive body of information about Myalgic Encephalomyelitis to ensure safe treatment for all.
What is missing is the proper identification of the disease in the first place.
What is missing is the feeling of safety that you will not be harmed or misinterpreted either by ignorance or arrogance, poor training or complacency.
What is is currently missing from my life is:
- safety, security, respect, hope: hope of understanding and recognition
- hope of treatment that will help not harm
- hope of medical respect and listening to my experience
- hope of knowledgeable clinicians who can advise and investigate properly
- hope of thorough and honest interaction
- hope of a safe direction towards healing, with correct and appropriate support, hope of understanding my experience, based on the integrity of a biomedical pathway, anchored in true medical knowledge about my disease.
What is missing, is any service at all specifically for my disease and that will continue until there is recognition of the utter mess the Health Service is in, in regard to :
- the truth of this disease especially the needs of the most severely affected
- the mistreatment and misinterpretation of patients
- the wrong inadequate health provision currently on offer
- the ignorance of neurology that refuses to engage with the disease, the willingness to separate all the other people with all the other illnesses not belonging to Myalgic Encephalomyelitis so that those people who have it can find hope for the future.
That is why I am missing today from everything normal, from life as it should have been, had I not been ignored, harmed, misinterpreted, mistreated, denied, abandoned, repeatedly for over two decades now.
That is why we are all missing, trapped inside bodies that do not work, desperate for a pathway out of here, still not forthcoming, still misdirected and invaded by psychiatry.
It is long overdue for psychiatry to go missing instead, from Myalgic Encephalomyelitis. So that we might reclaim a health pathway and our lives.