SIR - I am writing to draw your readers' attention to the month of May being ME Awareness month.
Myalgic Encephalomyelitis (ME), sometimes also referred to as Chronic
Fatigue Syndrome (CFS) has been a much misunderstood illness by the general
public. It is estimated to affect at least 250,000 people in the UK. It is
not just about feeling tired all the time but a debilitating and distressing
condition, which is classified by the World Health Organisation as "a
disease of the central nervous system".
The illness may develop gradually or occur as a result of an acute infection
or virus. There is NO CURE for M.E,eventhough it is estimated to affect 250,000 people in the UK many of them chidren.
M.E can be a very frightening, isolating, painful,and severely life limiting illness.
Some of the symptons are,
difficulties with memory and concentration,
Sensitivity to noise and light
Swollen glands, mouth ulcers,
Trouble with balance and coordination,
Digestive problems, IBS, headaches,
Poor temperture control, Severe Nausea
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
This is only some of the symptons, there are to many to list.
National surveys have revealed that 25% of people with the illness were so
severely affected that they have at some time been housebound or bedbound
and that over 70% of adults had lost their jobs. Lets not forget about the children with ME. Kids who develop M.E in their teens go into adulthood having lost all their social contact, living each day in Pain and very liitle understanding or help fom the medical profession. Not only have M.E sufferers have to put up with this terrible Chronic virtually invisable illness they also have to put up with the disbelief that comes along with it.
Inappropriate educational demands impede recovery and are a key cause of relapse in children.
Energy Efficient Education (home tuition, distance or virtual learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to their medical and special educational needs.
ME/CFS can affect anyone at any age and from any ethnic group
More research is needed to improve diagnosis and find effective treatments
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
We have just took part in the Belfast Marathon for the 3rd year in aid of ME Research and donations are still coming in. Anyone still wanting to make a donation can do so up until August by visiting www.justgiving.antoinettechristie or you can phone me on 07809370811 or Jeanette on 0793637881.