Date:

MP for
House of Commons
Westminster
London
SW1A 0AA

Dear

As someone affected by Myalgic Encephalomyelitis (ME) and as a member of
your constituency, I am asking you to attend the BRAME meeting about ME in
the Grand Committee Room, in the Houses of Parliament on Thursday 14th May
1998 between 2 - 5 pm. This is your opportunity to make a difference to the
lives of many of your constituents by listening and learning about the
reality of living with ME and how you can help them.

There is a conservative estimate of 170,000 people with ME in the UK, but
it has been estimated that there are actually up to 500,000 people, 25% of
which are severely affected. ME does not respect age, occupation or gender
and in children 51% of long-term sickness absence from school was due to ME.

The plight of the severely affected is desperate, they can be ill for
decades or even a lifetime. Some are not only house-bound, but bedridden.
Many of the latter have to be nursed 24 hours a day by relatives or carers;
they are too ill to reach the bathroom, to get up and dress themselves -
some cannot speak, they can become paralysed and even have to be tube fed.
Their chronic pain is unbearable and relentless, life for many becomes
intolerable.

So many people become chronically ill with ME because they are given an
incorrect diagnosis and bad advice on how to manage their illness. In
addition, many have to face and cope with the biased attitudes of doctors,
society in general and even family and friends. Given the scepticism
surrounding ME, many sufferers also face problems when trying to claim
benefits.

Money needs to be put into researching the physical, organic causes of ME.
The Health Department and Medical Research Council spent nothing on
investigating the physical causes of ME 1996-1998, and people with ME in
the UK look more and more now to countries such as Australia and the USA,
where ME has been classed as a 'priority one' illness along with AIDS, for
a breakthrough (the US Government voted $11.8m to ME research, 1995-96).

You can help by attending the BRAME meeting on Thursday 14th May. Listen
and learn about the reality of living with the illness. Talk to those
affected, those who know what it is really like, they will have made a
considerable effort and will face enormous consequences to their health for
some time, in order to give you this opportunity.

The meeting has been arranged by the Blue Ribbon for the Awareness of ME
(BRAME) campaign and Tony Wright, MP for Great Yarmouth. As well as being
able to talk face to face with those affected by ME, there will be a
presentation by various individuals who have a personal interest in ME.
This includes talks by a medical researcher, ME sufferers representing
different sectors of the ME community and the results of a survey on ME and
Benefits.

It is sad that more and more people are dying as a result of problems
created by their ME, only a small number of these deaths are through
suicide. How many more people have to die before people take notice of our
plight.

Please do not ignore us, listen to us, come to the meeting on Thursday 14th
May. We look forward to meeting you, and would be interested to discuss
ways in which you might be able to help. If you require any further
information about ME and the meeting, please contact BRAME at the address
below.

Yours sincerely









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BRAME
30 Winmer Avenue
Winterton-On-Sea
Great Yarmouth
Norfolk NR29 4BA
Telephone/Fax 01493 - 393717
Link to Web site