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A Hidden National Scandal Exposed
Added: (Tue Jan 24 2006)
Invest in ME (IiME) today exposes the real suffering of people with Myalgic Encephalomyelitis (ME). IiME is publishing on its web site the ITV Meridian programme which shows the devastating affects of ME on whole families.
The plight of thousands of people living in misery and isolation with the illness Myalgic Encephalomyelitis is at last being recognised.
The illness affects an estimated 250,000 people in the UK, a significant proportion of them children. Some children who develop the illness in their teens go into adulthood having lost all their social contact and living each day in pain and with very little understanding or help from the medical profession.
In a programme made by Meridian Television and broadcast by the voluntary organisation, Invest in M.E., severely affected sufferers explained the devastating effect the illness has had on them and their families. The shocking effects are most clearly seen
- with Suzy, who spent 2 years in a near coma state living in an icy, darkened room where no-one except her parents could visit because she was so light and noise sensitive,
- and Lauren who, having been ill since the age of 12 is, at 20 years old, mostly bed-bound and some days too weak to even read or watch TV.
As Suzy’s father, Roger explains “Suzy was in a “living death” state for the first two years after her illness became really severe. Many would still regard her as such since her condition remains very sad.”
M.E. causes, amongst other things, severe neurological, cardiovascular and cognitive problems and sufferers can be so exhausted that just holding a conversation can leave them drained and weak for many days. The body starts to “shut-down” systems as energy is expended in walking or doing tasks until the person cannot stand, walk, talk, think, eat or do any of the normal activities. The most severely affected end-up in bed, in darkened rooms because of light-sensitivity, and can need to be fed by tube.
Despite the vast number of sufferers and the fact that a quarter of them are severely affected like Suzy and Lauren, the Government has given no money for bio-medical research, choosing instead to squander £11.2 million by setting up ME/CFS centres to deliver programmes of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) which can be positively harmful to people severely affected.
Doctor Jonathon Kerr of Imperial College, London has recently found that in people with M.E. there are 15 genes which are 4 times more active than in healthy people, which indicates that their immune system is working overtime. In the programme he says he is confident that he will have a cure within a year. Despite this promising discovery none of this research receives a penny from Government funding, instead having to rely on charitable donations from people like Lauren and Suzy. The charity MERGE, like IiME, believes that a programme of biomedical research is needed and says:
“Given the expanding core of evidence for a biological pathology for this illness, it is widely felt by patients, support groups and their political representatives that scarce research funding would be better targeted at appropriate biomedical investigation and treatment of the physical basis of ME.'
Meanwhile it is up to the carers and sufferers themselves to persuade the Government that rather than waste money on teaching inadequate coping strategies, that money would be better spent on finding the cure. As this illness is calculated to cost this country £3.5 billion each year, how much money could be saved on benefit payments and, more importantly, how many people like Lauren and Suzy could be given the chance to lead a normal life?
To see the programme on-line and for more detailed information on the condition and problems faced by Suzy and Lauren and thousands like them, visit www.investinme.org
or go direct to the Meridian link at http://www.investinme.org/Mediatelevision.htm#Meridian_TV_–_ME_Expose
Notes to Editors:
Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland says that the treatment (or lack of it) of ME sufferers in the UK is a national scandal. In a synopsis of the problem for a proposed UK Parliamentary Inquiry into the illness he says that it is time that the school of psychiatrists who perpetuate the myth that M.E. is a “non-disease” are held publicly accountable.
Professor Hooper will be one of the eminent speakers at the International ME Conference 2006 which aims to highlight the misery of the illness and the inadequacy of the Government's response to it. The conference will take place in Westminster on 12th May 2006 – which is International M.E. Awareness Day.