Annual Report 2002 - page 2

The Board of Trustees meet every month and provide governance to, and legal responsibility for the charity. The background of the executive committee members is diverse, with, constitutionally, at least one AYMEr and one parent of an AYMEr. The inclusion of business personnel with no prior knowledge of the illness has been helpful to plan the future of our organisation as it goes from strength to strength.

Six staff work in the office. They support the work of the volunteers; take responsibility for special projects, staff the helpline, send out information; maintain the databases and all of the financial aspects of the charity. They give heed to the development of the charity, raising funds through trusts and company giving and communicating with the media.

Six Professional Advisors assist AYME in the fields of medicine (2), education (2), psychology, social services (child protection).

300+ AYMEr volunteers of all ages carry out the day-to-day membership services (see opposite page). Those between the ages of 16y and 24y have the opportunity of working towards a Millennium Volunteer award which is issued by the Department of Education and Skills. See page 9 for this year's successful MVs.

Support for the parents
One of AYME's parents maintains a database of those parents wishing to make contact with other families.

This successful service has 400 parents, proving a real lifeline.

PR Officer Jan-Aug 2002 Claire Jones

Raising Awareness of ME 40 Media Spotlights on AYME members in 2002 covering local and national radio, TV and newspapers. Over 100 AYME members are signed up as ambassadors for AYME, collecting cheques and giving short talks on ME.

PR Officer Sept 2002 onwards Jo Brown

Fundraising Officer Jan-Jun 2002 Rhona Barton

Raising Funds Fundraising events run by AYME members and their families, together with many donations, meant that we were able to increase our spending on services. More ideas of raising money is continuously given to our members in their magazine, by the fundraising officers.

Fundraising Officer July 2002 onwards Jim Griffin

Webmaster Paul Weathersby

Web mania - www.ayme.org.uk AYME's web-site is designed and run by the members. A secure members' area presents our members with many friends online, through a lively message board and chat-room. Total number of unique visitors in 2002 - 42,097 Total number of page views in 2002 - 5,483,939

Membership Officer Helen Catling

Contacting others accross the UK 59 regional groups were developed across the country in 2002. 270 new Penpals and 167 E-mates, were matched together, with a brand new service of Text mates introduced at the end of 2002. Audio Tapes and Notebooks were introduced this year, with housebound members adding an entry themselves before sending the tape or book onto the next one on the list. Volunteer recruitment is a vital service to keep all the teams working smoothly.

General Services Officer Alasdair Leitch

Postal Library of information and interest Over 350 items of books, videos and audio tapes were sent out to members. Birthdays always remembered The birthday team send out cards and presents to every one of our members to arrive on their special day. The cards (different every year) are designed by the general membership through a competition.

Special Services Officer Miriam Morris Special services for children and the severely affected Children - 12 years old and below Children are in the minority and could easily get forgotten. But no-one is forgotten in AYME! Children are personally welcomed by the children's co-ordinator on joining. They have a separate children's advisory group who give their views on the two special children's pages in the magazine. Severely Affected Members (SAMs) 250 Severely Affected Members (SAMs) have special consideration given to them. Over the festive season - a particularly difficult time for SAMs - special thoughts are sent, with Christmas cards, good wishes, and 'survival tips for the festive season', written by those with expereince of feeling so ill. Space in the members' magazine is reserved for cheery messages to these special young people. Over 100 Buddies write to 50 SAMs with regular notes and cards, without expecting a reply. Further support is given to the severely affected by means of the 'Teddy Team' Teddy Team In 2002, over 100 teddies were sewn by AYMErs and sent out to severely affected members. Eimar McKay (left) is AYME's Teddy Co-ordinator, working in Miriam's Special Service's team. Appealing for Teddy Makers in the Cheers magazine, Eimar sends off a test package, sufficient to make one Teddy. If the sewn Teddy passes the 'teddy test', and is suitable to send out in the name of AYME, Eimar sends a parcel of sufficient material, stuffing, pattern, eyes and mouths to make 10 Teddies. When completed, the Teddies are sent to Severely Affected Members with a friendly note to wish them well and for them to know that they are being thought about. "Thank you so much for the gorgeous teddy which came in the post today. I have called him William and I know that he was made with such love and care. It has made my day, week and month. Every time I look at him, I smile. Thank you again,"� SAM The scheme was funded through Eimar's involvement in the Millennium Volunteer scheme.

Members' Advisory Panel (MAP)

The membership is represented by the MAP: a group of 26 AYMErs, voted in by the young team officers. MAP is representative in terms of any gender bias in AYME, members' ages, geographical area, race and illness severity. They are contacted whenever an opinion is needed, such as for new, AYME information leaflets or booklets.

Millennium Volunteers

"Gaining an MV award certificate has meant so much to me. I thought that I had nothing to offer because I was ill. I now know this isn't the case. I have so much more self-confidence."�

Cycle Challenge 17 friends of AYME dipped their cycles into the sea on the West coast of Cumbria, cycled through the Lake District and across the Pennines to Sunderland, raising over £17,000 for AYME in sponsorship.

The support vehicle makes a welcome lunch time break for the cyclists.

3 day annual conference/get together for AYMErs 160 delegates enjoyed three relaxing conference days, meeting up with new and old friends, and exchanging information. Three of the confidence building workshops, (funded by the Department of Health and Abbey National) were run by our young people themselves. They had been trained earlier in the year by AYME's psychologist. The AYME Team Managers presented the conference programme, organising a 'bean-bag' disco, and arranging for some 'Furrytherapy' from the dogs from 'Pets Are Therapy' charity.

Through a grant from the Queen's Jubilee Fund, AYME sent every member a miniature bottle of 'champagne' soap bubbles and a card, designed by a 13 year old AYMEr, to celebrate the Golden Jubilee.

Words in the tiny card, writey by AYMErs:
On Monday 3rd June 2002, our nation will unite to celebrate the Queen's Golden Jubilee. At 4pm on this day, join together in spirit with hundreds of other AYME members in our own special community by popping the cork on your bottle, blowing bubbles and making a wish for a brighter future for you and all your friends within the AYME community. With the strength and solidarity of our friends, we can make these wishes and dreams come true.

AYME's invitation to No 10 Downing Street Cherie Booth invited AYME to a private reception at No 10 Downing Street in May 2002, asking us to nominate 40 people. High profile health professionals, politicians and funders accepted the invitation. Our young people explained to the invited audience what AYME was all about and how the membership are involved in all of the day-to-day services. Following a moving and very supportive speech by Cherie, AYMEr Kaye Redwood (left) thanked her for her hospitality and left no one in any doubt about how proud she feels about her organisation.

Host Cherie Booth QC and AYME's president, Esther Rantzen, join nine AYME members for the official photograph at 10 Downing Street in May 2002

Raised profile following the visit to No 10 Following the event, AYME was invited onto steering groups for: National Service Framework for children at the Department of Health. Production of guidelines on ME, to be distributed to paediatricians from the Royal College of Paediatrics and Child Health. AYME received funding from Abbey National, and a promise of further funding opportunities from businessman P.Y. Gerbeau and jazz celebrities Dame Cleo Laine and John Dankworth.

Celebrity Support AYMEr's PR team contacted 139 celebrities during 2002 35 celebrities showed their support by sending signed photographs and messages. The photos and messages were auctioned off to AYME members and raised £500. 6 celebrities agreed to be interviewed by AYMErs for their magazine, Cheers.
"I wholeheartedly support the work of AYME and wish the organisation continued success in their vital work supporting young people with ME. At no time in anyone's life would it be fair to contract and live with this debilitating illness. But the work of AYME means that children and young adults have a forum of their peers to be supported and helped by. I understand what it can be like to live with an illness whose symptoms make every moment of life a challenge. I also know that in these difficult times it is an enormous comfort to know there are people there for you - and that's why I so applaud the work of this organisation. Wishing you all the best." Pierce Brosnan		"It's great that you all contribute towards the magazine as I can appreciate that it is easy to feel alone with your illness. It must surely help to know that others are in the same boat too. Let's hope that with medical research, people suffering with ME are given real signs of better diagnosis and treatment. Best wishes." David Jason