A close family friend gave me a book about ME/CFS to read. It was called ‘Understanding Acute Onset Post Viral Syndrome’, published in 1987 by a medical professional. I prefer this name than ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome). It highlights the illness came about from a virus and does not focus primarily on fatigue, as their are many symptoms. Although, I have researched that not all suffers had onsets from viruses. Mine developed from ‘Glandular Fever’ so therefore unfortunately this has probably biased my opinion. What was incredible to read in the book, was that the author accepted the illness existed (which was not all that common at the time), and wrote he hoped in ten years time tests would be readily available. Another ten or so years on top of that and there is still nothing in the public domain.
This is an unpleasant view, but could it be that because the illness is not life threatening, governments have not done as much as they could have. People living with ME/CFS would describe it as a ‘living hell’ and therefore much more urgency is required. The only death toll I have found are suicide cases. I appreciate people giving up coping in a situation where no help is offered, and everything has to done for yourself. This in some extreme cases is just not possible before even considering how to fund treatment. I have had some pretty dark moments in the past two years but try my hardest to remember the enjoyment I had from life beforehand and hope that one day those will return.
I must reiterate I do see a place for the two therapy treatments (CBT and GET). What is so frustrating for ME/CFS sufferers is the understanding has progressed. There has been extensive research undertaken all over the world looking into particular aspects of the illness, some getting excellent results. Its seems that in the UK, NICE are not willing to deviate away from anything but therapy and offer such potentials, until a comprehensive conclusion is found. I believe ME/CFS is a multi dysfunctioning illness with many possible reasons for a dramatic decline in health and a single answer they require may never be found. Therefore, as I see it, patients must experience all potential treatments for themselves, to experience whether any possible improvements in health can be gained.