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The BRAME Meeting in Parliament on 14 May 1998 was a hugely successful day, which resulted in the All Party Parliamentary Group on ME being set up by Tony Wright, MP for Great Yarmouth. The other result from the meeting, was that BRAME was asked by the then Chief Medical Officer Kenneth Calman, to produce for them a document of the services which were needed/problems faced by ME sufferers within the NHS. As a result of the above, the CMO announced that he would be setting up a Working Group on ME, and BRAME was asked to attend this announcement, as well as myself being asked to be a member of the Key Group.

You can read about this momentous day below with my description of the day's events, and also please read Alan Wakely’s view of the day which follows.

BRAME Meeting in the

Palace of Westminster


Thursday 14th May 1998

On arrival at the House of Commons at 2pm 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 3pm, 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 3.15pm. 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 3.10pm and at 3.50pm 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

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 acknowledgement 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."

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 through 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 (this is found below).

Tanya and Christine Harrison
Chairperson and Secretary - BRAME

Great Days

Thursday 14th May 1998

Few days are great days. Great days are those recorded in the history books because something happened somewhere worthy of note. At some indeterminate time in the future that event will be studied as a pivotal point in the progress of mankind.

It is a rare occasion indeed for any man, woman or child to be invited to participate in extraordinary events, we are either present at significant moments, or elsewhere in the sideshows fate orchestrates to keep us busy.

However, amongst us are people for whom the sideshows are inadequate. There comes a point when control must be exercised over this random circus.

In the Grand Committee Room off Westminster Hall in the Houses of Parliament on Thursday the 14th of May 1998 such an event took place. It was a Great Day.

The setting was grand, well established in the history books, a monument to the struggles that led us to democracy, a symbol of integrity and solid purpose. The Grand Committee Room is furnished with leather covered chairs, fine curtains, the beautiful arched timbers of the roof. A good place to do good things. The weather was glorious, just the right day for Great things to be done.

BRAME is the Blue Ribbon for the Awareness of M.E. organisation founded and run by Tanya N Harrison and Christine Harrison. BRAME organised the event, but neither Tanya nor Christine would see themselves as Great and they would perhaps suggest that M.E. not BRAME was responsible for the meeting, for shifting the sideshow to front of house.

The purpose was to put before MPs the tragic plight of those afflicted by this disease. A disease so debilitating, so confusing in its symptoms, doctors do not know how to treat it, yet so indiscriminate in whom it attacks no one can feel safe from its pernicious attentions. The hope is that pressure will be put on the Government to address urgently the need for funding for research. Now.

Desperately ill people from many parts of Britain attended, they found the courage to risk serious deterioration in health to get there, travelling many hundreds of miles to plead for all sufferers of M.E. The scene was almost Biblical.

Roz, so ill she was being held up by friends even though sat in her wheelchair, eventually so weak she was lowered to the floor for relief. Simon, with enormous strength of will - his body had but little - finally succumbing to the strain, lowered himself, slid to the floor of the stage after giving his presentation. Throughout the room bodies rested on the floor for respite, to recover just enough strength to get back into wheelchairs. Lazarus would have laughed.

The background to all this had a surreal, bizarre atmosphere. The Division bell ringing and MPs leaving to vote with the unwell at their hurrying feet. Expensive cars, well-dressed people leaving Parliament after the last business of the day, show business celebrities arriving for some hoot, and the crocodiles of visitors on educational excursions.

Is this what it should be? Is the integrity of this place more important in the function than the purpose?

The answers must be, No. The purpose is always more important than the function. This Grand and Great place has a purpose. To serve.

Should it be necessary for the ill, the informed, to drag themselves into the fish-eye lens of history to get help? The answer should be, No, but it was, Yes.

If any one carer or sufferer was asked the question, was it worth the pain and exhaustion, the answer would be an unqualified, Yes.

And there is the measure of Greatness. One of the tests passed to qualify for Historical Importance.

Will it prove to have made a difference? Will the Government hear and act? History will let us know, the fine buildings and rhetoric put to the test. Let us hope there will be no failure.

It is probable they will not be allowed to fail, nor should they be, because this is a desperate situation which is growing daily. Those named do not seek glory. They know how many are sick. They do not want a place in history. But they would like their lives back, please.

Alan Wakely (father of M.E. victim Katy Wakely)

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