 |
|
|
|
|
||||||||||||
 |
||||||||||||||||
|
SEARCH M.E. |
||||||||||||||||
|
HERE TO BE HEARD |
||||||||||||||||
|
||||||||||||||||
|
|
|
|
 |
|||
|
5.How are lives affected by ME?
M.E. ( Myalgic Encephalomylitis ) is a severe, debilitating illness which can affect people of all age groups from children as young as 3 to teenagers, adults and the elderly. It affects people from all ethnic backgrounds. It affects nurses, doctors, teachers, professional men and women, athletes, in fact anyone can be taken by this disease at any time in their lives. That is why it must be taken seriously by doctors, politicians and the general public. 25% of all sufferers are severely affected and are at best housebound and at worst wheelchair or even bed bound. Many are unable to sit up or feed themselves. They may suffer light sensitivity and must remain in a darkened room to avoid the extreme pain that the light causes. All sufferers experience not all but a varied selection of the following symptoms: Muscle and joint pain, food and alcohol intolerance, severe headaches, dizziness, nose bleeds, sensitivity to heat and cold, extremely low body temperature, lack of concentration and memory recall and many many more.
There are many reasons put forward for the causes of ME. Some say it is caused by exposure to chemicals used in food production, others to exposure to some pesticides. Vaccinations and anaesthetics have also been cited as causes. Others say it is the after effects of a viral infection. Many think it is made worse through stress. The truth of the matter is that no one can categorically say what the cause or causes may be. There are members of the medical profession who believe it is a physical illness and there are those who say it is a mental condition. This confusion is a result of not having a properly funded research programme to look with open mindedness at all aspects of this very complex illness.
The present answer to that question is NO. This will remain the answer until Government and the Medical Establishment “get their act together” and start to treat this as a very serious illness. It is estimated that there are 240,000 affected people nationally. The numbers increased by 460% between 1989 and 1999 making ME, in terms of insurance costs, second in the list of the five most expensive conditions. Three places above AIDS. Add to this the cost to Government through Benefit Payments and the financial impact of this illness becomes apparent. Surely this is an incentive to invest money in research to find both cause and cure.
It can last for a few months, a few years or a lifetime. Many never recover fully.
5.How are lives affected by ME? The effect of ME on every day living in many cases comes about suddenly and without warning. One day “normal” the next day trapped in a body that has ceased to function as it once did. Working life, social life, family life, sporting life, love life all gone overnight. The impact on the financial security of sufferers and their families is cause for great concern. Just imagine how that must feel. How would you cope with so many forced changes?
Well that is a good question and the answer depends on what your GP knows about ME and whether or not he accepts that it is a “real illness”. For even although ME is defined by the World Health Organisation as a nuerelogical illness and is accepted as such by the Chief Medical Officers in both England and Scotland many members of the medical profession, insurance companies and Government Officials choose to believe that it is a mental condition. The doctrine preached by psychiatrists only serves to detract from its severity and to belittle those who can only suffer in silence. They have openly suggested that ME “does not exist” and should be renamed “ malingerers excuse”. They have advised Government that sufferers only “believe” they are ill and that their state benefits should be withdrawn. Unfortunately they also have great influence over Government and Health Officials who allocate funding for research and who dictate future policy for care and support. These psychiatrists openly represent the interests of medical insurance companies on one hand by saying that those who suffer from ME/CFS who are seeking payment of benefits under their policies “should not qualify for such payments”. It has also been suggested that insurance companies place “such people” under covert video surveillance. On the other hand, they accept in the region of £200.00 per hour to assess claimants for the same insurance companies. Surely this is morally, ethically and may even be legally wrong. In light of the above it is evident that people who suffer from ME need support from their elected representatives in order that they be given their basic human rights. It is also very important that you, the general public, are made aware of the bias people suffering from ME have to face on a daily basis. They don’t want preferential treatment but what they do want and must demand is the right to be treated with the same degree of care and respect that people suffering from other long- term illnesses are freely given.
You can help by giving them firstly your ear and then your support. Please send your donations to SEARCH ME at 98 Forker Avenue, Rosyth, Fife. KY11 2UG
You may find the following article helpful when trying to understand what life with ME/CFS is like. The Thief of Many Lives by Kathleen Houghton --- Alaska CFS-MCS Association 2002.
|
|||
|
SEARCH ME is a Registered Charity No SC020252 and a Company Registered in Scotland No 138539. |
|||