at Westminster

BRAME Meeting in the Palace of Westminster

Thursday 14th May 1998

On arrival at the House of Commons at 2 pm we were met by a large group of M.E. sufferers, carers, and other professionals. There was a wonderful atmosphere of excitement and anticipation. As everyone began to introduce themselves to us and to each other, Tanya was busy doing interviews with BBC Radio 1, BBC Westminster and an interview over the phone with a newspaper. Tanya was also joined for the photo calls and interviews by the actor Andrew Lancel, who has a family member with M.E. and has offered his support to BRAME in the past, for which we are very grateful. Andrew also played the part of Nick, the son of Diana Longden - an M.E. sufferer, who died, in the film 'Wide Eyed And Legless' ('The Wedding Gift' in America).

Everyone moved into the Palace of Westminster and congregated in the Great Hall, which in itself is steeped in history. This was surely going to be the great day we had planned and hoped for with the support of so many M.E. sufferers, including those who are so chronically ill, and already MPs were coming along to talk to people and to give their apologies if they had other business during the actual meeting.

We were unable to use the Grand Committee Room until 3 pm, due to another meeting being held, which meant it took some time for the 130 plus people to come into the room and be given their information pack, but we still hoped to begin by 3-15 pm. Unfortunately, there were problems beyond all of our control when the person needed to operate the stair lift, for those in wheelchairs, did not arrive until 3-10 pm and at 3-50 pm we had to start the meeting with some sufferers still waiting to be brought up the stairs, for which we apologise.

BRAME intends to follow up important issues which we were made aware of, but which we were unable to discuss in the meeting due to insufficient time for the planned open forum.

The meeting itself went extremely well, and a comprehensive aspect of M.E. was discussed. The agenda was as follows:

Tony Wright MP
Tanya Harrison - BRAME
Dr. E. Dowsett
Simon Lawrence - 25% Group
Dr. John Richardson
Steve Jervis - M.E. Support
Meghan Shannon - MPWCs - USA
Dr. Dowsett - concluding summary
Tony Wright - concluding summary

A synopsis of the speeches will be put on the this website a soon as possible.

We were so upset when we found that we had used all of our allotted time and felt bad that we had not been able to hold the open forum.

In his closing address Tony acknowledged the amount of work Tanya and Christine have had to put into the BRAME Campaign to make it the success it is today, and he also spoke of his intention of setting up an All Party Parliamentary Committee on M.E., and his intentions to work closely with BRAME.

Tony Wright MP and the audience were told at this point that 52 MPs turned up on the day. This in itself is quite an achievement, as the average turn-out is usually very much less, and we were told to expect 20 MPs at the most. Tony emphasized to everyone how important it was to continue to write and to meet with their own MPs, and continue to inform them about M.E. and their own personal situations of living with this illness.

After the meeting closed we were surrounded by people thanking us for organising the event and for giving them the opportunity of being there.

We also invited everyone to inspect the wealth of information on display, which BRAME had collated, and identical sets were left for both the House of Commons library and the House of Lords library, on the organic and physical nature of M.E., and the research into M.E.

We would like to take this opportunity to thank Mr Tony Wright MP, and all his staff - particularly Bradley - for all their help and support in organising the meeting, and also to all those suffering with M.E., particularly those who are so chronically ill and debilitated with the illness, for making such an enormous effort to attend the meeting. We sincerely hope that this will be a real turning point in the treatment of M.E. and the attitudes which those of us living with M.E. have to endure.

Tanya closed her presentation with the following statement:

"It is said that every journey begins with a small step, but I hope today is a giant leap towards the acknowledgment and recognition which is deserving of such a chronic and debilitating illness, which is a life-changing experience for all those living with M.E. Please remember that today is not just an event, it is the beginning of a new way forward."

Meghan Shannon also sang a prayer called 'Humble My Heart' by Betsy Rose.

When the soul within me stumbles and heaven is hard to find
When the night is all ahead of me and morning is long behind
When I cannot rule the stars and the moon
Or turn the dark to day.

Humble my heart, humble my heart
But hopeful the music I play.

When the rage of nations fills the skies and poisons every breath
When the weapons of futility, they shadow us with death
When my arm can't reach to hold them back
And it seems we cannot win.

Hollow my strength, hollow my strength
But hopeful the song I sing.

Humble my heart, hollow my strength
But hopeful, hopeful the music I sing.

BRAME would like to thank Tony Wright MP for helping us organise the meeting, and our special thanks also to Dr Dowsett, Dr Richardson, Steve Jervis, Simon Lawrence and of course Meghan Shannon who flew over from America, for their presentations. Their input and particularly that of all the M.E. sufferers and carers who joined us was paramount to the overall success of the day.

We fully appreciate what an effect it will have on sufferers having made that journey and endured a long meeting on such a hot day, but your presence really did make a difference and we hope that you were pleased to be a part of the day that we hope will really make a difference for all M.E. sufferers.

Thank you to everyone who sent us letters and cards offering us support and wishing us good luck, we sincerely apologise in not having responded to you all as we would have wished, but you will appreciate it is just the two of us and we had to work very hard to collate everything in time for the meeting.

Thank you also to all our friends around the world who have given us so much encouragement and support and we hope that May 14th in Parliament, in London, will be a day to remember for us all, as a turning point for everyone in gaining acknowledgment and recognition that M.E. is an illness of physical and organic origin, and that appropriate guidelines, support and research will be forthcoming.

We have only just returned from London and so our apologies for not having information for you all sooner, but on our return we already had letters thanking us for organising the meeting from those living with M.E., and also from professionals who were present, and representatives of the Government, which is extremely encouraging.

As we unite together around the world theough the BRAME campaign, and our universal symbol of the Blue Ribbon, our voice will become louder and stronger, and we will be heard as we inform others of the truth and reality of living with M.E.

Our thanks to everyone, both in Britain and around the world, for their support and to Alan Wakely for the fax which was waiting for us on our return and which we felt really summed up the atmosphere of the whole day for you all.

Tanya and Christine Harrison
Chairperson and Secretary - BRAME

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