How many will it take?

How many deaths and tragedies is it going to take before NICE authorises funds to be spent on ME Research? There has been none/no/zilch/nada official monies put into biomedical research into ME in the UK. Research that has been done has been funded by charities which are funded by poor people on sickness benefits who can only afford a pound or two at a time.

Dr John Gow in Scotland and Dr Ian Kerr in Hammersmith have discovered differences in genetic expression in sufferers. 7 subgroups of ME have been identified. Australian doctors have found Urinary Markers. Muscle biopsies show abnormalities in laboratories. This has been funded by patients and relatives. After Sophia Mirza died of ME and her spinal cord was examined by several consultants at Post Mortem examinations in different parts of the country, it was found to be inflamed. They found other abnormalities too and Sophia had ME written on her death certificate by the Coroner.

All the Government has done is to set up clinics far out of the way of public transport. Patients are offered 6 sessions, and in that time they are told to feel more positive about being ill (Cognitive Behavioural Therapy) and to exercise because they are unfit (Graded Exercise Therapy, which can kill if carelessly prescribed).

The World Health Organisation classifies ME as a NEUROLOGICAL disease. People with other neurological illnesses such as Parkinsons, Alzheimers, Multiple Sclerosis, Motor Neurone Disease and Epilepsy aren't told to cheer up and get some exercise so why do people think it is OK to treat something as serious and life-stealing as ME so contemptuously? It ISN'T OK!!! How many deaths and how many broken families will it take before ME patients are treated as seriously and compassionately as sufferers of other neurological illnesses?

I lay this death and the deaths of other neglected sufferers at the door of those who stubbornly refuse to fund Biomedical research into ME.