Homepage List Of MP's who attended meeting
Letter from Meghan Shannon, MPWC's, USA
HEADLINE NEWS -- PARLIAMENTARY COMMITTEE TO BE SET UP.
BRAME Meeting in the House of Commons, 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 - ME Support in the Midlands - DLA Survey
Meghan Shannon - MPWCs - USA
Dr. Dowsett - concluding summary
Tony Wright - concluding summary
A synopsis of the speeches will be put on the BRAME 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 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 for the fax (sent prior to this report) 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
30 Winmer Avenue
Winterton-On-Sea
Great Yarmouth
Norfolk NR29 4BA
Tel/Fax: +44 (0) 1493 393717
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We also recieved this email through the MECHAT Online Service, which we just had to publish, for reasons that will come apparent as you read it............
"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."
Sent by Alan Wakely (father of M.E. victim Katy Wakely)
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List of MP's who attended BRAME Meeting Top
Tony Wright Great Yarmouth John Hayes South Holland & Deppings Phil Willis Harrogate & Knaresborough Charles Clarke Norwich South Andrew Miller Ellesmere Port & Weston Jeffrey Donaldson Lagan Valley Bruce Grocott Telford Rt. Hon. Eriv Forth Bromley & Chislehurst Steven Farler Newcastle-upon-Tyne Archy Kirkwood Roxburgh & Berwickshire Yvette Cooper Pontefract & Castleford David Kidney Stafford Mark Todd Derbyshire Dr Ian Gibson Norwich North Andy King Rugby & Kenilworth Chris Pond Gravesham Adrian Sanders Torbay Paul Burstow Sutton & Cheam Malcolm Moss Cambridgeshire North East David Rendel Newbury Tim Loughton Worthing East & Shoreham Ivan Henderson Harwich Beverley Hughes Stretford & Urmston Mike Gapes Ilfor South Dr Rudi Vis Finchley & Golders Green Desmond A. Swayne New Forest West Rev. Martin Smith Belfast South David Tredinnick Bosworth Nigel Evans Ribble Valley David Marshall Glasgow Shettleston Robert Blizzard Waveney Stephen McCabe Birmingham Hall Green Paddy Tipping Sherwood Anthony Colman Putney Llin Golding Newcastle-under-Lyme David Chator Bury North Phil Sawford Kettering Rt. Hon. John MacGregor Norfolk South Peter Luff Worcestershire Mid Peter Bottomley Worthing West Laura Moffat Crawley Tam Dalyell Linlithgow Rt. Hon. Virginia Bottomley Surrey South West Michael Jakez Foster Hastings & Rye Jane Griffiths Reading East Valerie Davey Bristol West Sir Sydney Chapman Chipping Barnett Rt. Hon. Geoffrey Johnson-Smith Wealdon Christine Russell City of Chester Janet Dean Burton Philip Hope Corby Jacqui Lait Beckenham
Interested MP's who could not attend the Meeting. Terry Rooney Bradford North Edward Davey Kingston & Surbiton Jim Wallace Orkney & Shetland Kali Mountford Colne Valley Gary Streeter Devon South West Terry Davis Birmingham Hodge Hill Dr Evan Harris Oxford West & Abingdon George Foulkes Carrick Cumnock & Doon Valley Sir Patrick Cormack Staffordshire South Mike Hancock Portsmouth South Dr Peter Brand Isle of Wight Gillian Shepherd Norfolk South West MP's who intended to attend the meeting Cheryl Gillian Chesham & Amersham Bill O'Brien Normanton Harry Barnes Derbyshire North East Win Griffiths Bridgend Richard Livesey Brecon & Radnorshire Andrew Hunter Basingstoke Joe Benton Bootle Other Interested MP's Rt Hon Tom Clarke Coatbridge & Chryston Llew Smith Blaenau Gwent Ian Bruce Dorset South
If any of you receive or have received a reply from your letter to your
MP about the BRAME conference, can you please let us have a copy so that
we know which MP's to approach in the future to continue our campaign.
Letter from Meghan Shannon, MPWC's, USA Top
Dear Steve and ME Support,
I want to say something for all ME/CFS persons and their care-giver's. On May 14th I took
part on a committee at Parliament in London. It was the most incredible experience I have
ever had. People came in from all over the UK, many in wheelchairs, many with canes and
many walking slowly on their own with dark sun glasses as it was a very hot and sunny day.
All of us had someone with us who was well to lean on or for physical and emotional
support. I had that kind of support too, even though I was a foreigner, Chris Harrison and
Tanya and her brother made sure I was taken care of. I felt safe the whole time I was in
Britain.
You see I had a "Cheap" airfare, I had to spend two weeks in Britain which meant
I had about 10 or 11 days after the Parliament Meeting to spend in Britain, with very
little money. I flew over with $300.00 cash that was worth about 188 pounds in British
money.
From the beginning BRAME, made sure I had a place to go, they set up a hotel for four
days. The ME support group of the Midlands also helped to defray the cost of my stay.
Steve Jervis, made sure I knew where to go as soon as I landed in England and made sure
that I would have a place to stay the whole two weeks I was in England.
As I started out on my trip after much hesitation....the hesitation came from the many
years of going back to Washington DC and to Atlanta Georgia to the Meetings concerning
Chronic Fatigue Syndrome as well as Women's Health. Always when I came back home from the
meetings that dealt only with CFS/ME I would find myself asking, "Why did you do
that?" It always felt as if we patients were being given 5 or 10 minutes to talk,
however the NIH and CDC didn't really listen. Dr. Philip R. Lee was listening, but he was
only one man. So when I decided to come to England I had to put the trip into perspective.
How much good was I going to do and should I spend so much money to go to this meeting?
The answer was yes, it felt a lot like when I went to Belgium in 1995, to the first World
Congress on ME/CFS and related immune disorders.
I knew that this meeting could be attended by one or two Members of Parliament and be a
total "bust", or we would get the attention of more Members of Parliament. I
never thought in my wildest dreams that 53 Members of Parliament would walk through those
doors to listen to the six of us speak and take in the room full of very ill people.
As I sat on the stage waiting for my turn, I was last. My anxiety started to rise. Tanya
at the age of 22 had a well thought out speech and was obviously caring more about the
patients in the room then anyone else, she chaired that meeting with such grace and style.
Steve Jervis and Simon also had incredible speeches, I found myself adding things to my
speech as I had no idea how alike the Americans are with the UK. We are struggling with
horrible discrimination with this illness. Even though the British do have a social system
and they do take care of the ill much better then the Americans, it still came down to the
same issue, how real is this disease.
The two doctors, world renowned people, Dr. Richardson and Dr. Dowsett, spoke in such
support of the patients. Nothing I had ever experienced in any of the USA meetings. It was
clear that these two doctors were held in great esteem by the British, they leant the
validity to our meeting. I found myself learning so much about this disease. What kept
coming up for me during all of the speeches was, "this is not new, there is nothing
mysterious about this disease". Between the two doctors and their meticulous notes of
patients ( a total of 80 years of research between them) everything that I and other
speakers had noticed about this illness, was already documented in their notes.
The patients lying down in the meeting reminded me of the many meetings in 10 years that I
have gone to in the USA, but it was in closed doors in the Health and Human Service
Building. The public never saw how sick we are. This time it was in the Grand Committee
Room in Parliament, it was as if the whole world could see for the first time how serious
this illness was. The response was genuine care. Water was brought out to all of the
people in the room and food, something that never happened in the meeting in the
Government meetings in the USA. People were gently laid on the floor or helped to the
floor as the meeting went on.
One would have had to had the heart of a monster to ignore the courage all of us showed in
coming to that meeting on the 14th. It took it's toll on the speakers as well, Steve was
in a great deal of pain, Simon finally had to slip to the floor on the stage, Tanya sat
with determination, and showed the stress when she spoke another young ME sufferer who
died as a result of ME. I tried to sit professionally, but found it hard, I can't sit in a
chair or stand for any length of time with out putting my feet and legs up. I eventually
move over and used the chair next to me to prop me up.
I want to thank Chris and Tanya of BRAME for asking me to come, and for trusting me. I
also want to thank the ME community that came together to make sure I was taken care of. I
was frightened when I took off for Britain, I had no idea what I was flying into. I was
trusting in my instincts and prayer. Steve Jervis said prior to my leaving in an email
"Don't Panic"; so I didn't. I worried though.
My worry was fruitless. I had a great time staying with Chris and Tanya in their wonderful
home in Winter-on-Sea. I recuperated with them for a few days. I then went to southern
England, Somerset, and was taken care of an ME patient in remission. Gary, he took me all
over the beautiful countryside, to the healing waters in Glastonbury, to the beach of Lyme
Regis. His little village of Yeovil was so calm and beautiful. I was able to see a friend
of mine perform in a concert 7 miles away, that was a bonus. Being a musician it was great
to see her perform in Britain instead of America. I have spent time with her in the last
few years, but I must say it made me feel so full of life to be able to sit and listen to
her sing again.
I then went up to Essex to spend the last three days of my trip in Britain. I was in a
town called Leigh-On-Sea. (every place I stayed I was next to the sea, I live in Cardiff
-By -The Sea, California) Again I was being looked after. I loved it in England and found
myself not wanting to go home.
The ME community really came together and took care of me. Thank-you. To the American
ME/CFS patients I want you to know that BRAME and the Midlands ME Support group are real
people, really interested in helping people who are ill. These are people to be trusted.
As we join hands together we become stronger. The truth will speak for its self.
I have been home two weeks, I can't believe it has been that long. I urge all of the PWC's
and MPWC's to join us in BRAME and it's efforts. I know the isolation...coming home was
really hard. Being able to contact those by email and phone has sustained me. I live
alone, and as much as I love my 13 year old cat Elsie (who thinks she is 3 years old) she
is not enough company at times when I feel so alone. I hope that we all can ride the crest
of this wave of awareness and soon we will no longer be isolated and ignored and treated
so badly.
I really feel blessed for this trip.
Meghan-Morgan Shannon
Co-Founder MPWC's, Contact person and American BRAME