2023 has been a year of change at the ME Association. Change within our staff and our Board of Trustees.
This year we have said goodbye and a well-earned retirement to Tony Britton, our fundraising manager, after 20 years with us. Hilary Briars, our ME Connect Manager, is leaving us this month, to spend her retirement doing those things she has never had time to do before. I shall miss her calm logic and the wonderful friendly voice. In place of our retiring trustees, Nicola Anson, and Rick Osman, we welcomed Georgina Evans and Michael Mitchell as associates. With Rick Osman, our Vice-Chairman, leaving the Board, David Allen was unanimously appointed to take up that role.
Our charitable work in the past year has been extensive and productive. Its core objectives, to inform, support and fund research, continue to drive us. With leaflets and booklets on almost every aspect of the illness, including the practical aspects of living with it, we have helped thousands of people to deal with ME/CFS. One of the results of the Covid virus has been that many now suffering from Long Covid have come to our website for information on the symptoms we share with that illness. Our website and social media enabled us to reach people throughout the UK and abroad. We keep pace with the latest developments in management, diagnosis and treatment through our social media news broadcasts and e -newsletters. We have a substantial presence on social media with a first-class team answering enquiries and engaging with everyone who has been affected by ME/CFS and Long Covid.
Our support for people with ME/CFS comes through ME Connect, our telephone helpline, email, and social media private messaging service. ME Connect is a professionally managed information and support service unique amongst ME/CFS charities. With an all-year-round service, our highly trained volunteers empathetically listen to heartbreaking stories of people devastated by this illness. Their role also includes signposting callers to other agencies where help may be available for them. This year, Long Covid sufferers, with similar symptoms to ME/CFS, continued to swell numbers contacting ME Connect.
Campaigning has always been a core part of our charity’s work and we are fortunate to have amongst our trustees a consummate professional in this field. Martine Ainsworth-Wells has led our Communications Team in driving attention to issues that face all of us with this illness. This year we ran our biggest ever campaign called “Count ME In”, with a survey attracting over 7,200 responses – the largest response to date. The aim was to capture the experiences of those people living with ME/CFS and Long Covid and use these results to be more effective in trying to improve health and social care in the months and years ahead. The campaign behind this resulted in 2,746,672 people seeing or listening to its promotions. The results of the survey will be analysed by an independent research team – and we will publish their full report early in 2024.
Research funding continued throughout the year. Your charity continued to fund the basic running costs of the UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine. We have recently agreed a further two-year funding of this most valuable resource. Demand from researchers for its blood samples has steadily increased. Other research funding has been provided at Leicester University, Oxford University, Liverpool, and Surrey Universities. We have also entered a new collaboration with the Manchester Brain Bank to carry out postmortem research.
Effective implementation of the NICE Guideline on ME/CFS involves the charity in much work. Some hospital trusts are still offering management of the illness based on GET (graded exercise therapy) and CBT (cognitive behaviour therapy). Our Medical Advisor, Dr Charles Shepherd, wrote to many health bodies during the year requiring them to update their advice and information about ME/CFS and achieved much success. Your charity continues to monitor implementation of the Guideline across health and care providers. We have also been heavily involved in the Department of Health and Social Care Delivery Plan consultation on the future of services for ME/CFS patients.
Forward ME is an ‘umbrella’ grouping of several ME/CFS organisations including the ME Association. We make a substantial contribution to its knowledge base, especially on the medical side.
The charity’s membership has held steady despite the challenging economic outlook. I am very grateful to all our members for continuing their support and enabling us to continue our work. The ME Association has always adopted a cautious approach to its funding and its Audit, Risk and Investment committee meets every 2 months to review our income and expenditure and budget for the future.
In the past year we have continued the strategic review of the charity’s core objectives. We have identified who, about what, and how we need to support people with ME/CFS. Similar reviews have looked at finding diagnostic markers, causes and treatments together with our remits to educate and influence. We are now moving forward to implement the strategy.
Our quarterly magazine for members, ME Essential, is our main resource in keeping our members informed about what we are doing. We also mail ME Medical magazine to many healthcare professionals, containing more details of recent research findings in the field of ME/CFS and Long Covid.
Donations, appeals and legacies have shown how well our charity is regarded among the community. We are overwhelmed at your generosity and efforts to raise money through an amazing variety of events. The generosity and ingenuity that supporters show in raising funds is deeply moving. We are very grateful for all your help.
Our staff have worked tirelessly throughout the year to enable the charity to continue with its work and the trustees wish to thank them for their dedication and sheer hard graft. I would also like to thank our trustees for giving so much of their time. Several have ME/CFS, look after someone who has it or lead demanding working lives. With them, this charity has prospered. Without them, it would be lost.
The coming year will be testing but our work for you will not slow down. New campaigns are being prepared and research opportunities examined. We go into the New Year with great confidence. I believe that the perception of our illness is undergoing a change. The message that ME/CFS is a real, physical illness is beginning to reach those parts of the medical world which had previously turned a deaf ear towards it.
The ME Association Annual General Meeting takes place on 11 December 2023 and is open to charity members.
Neil Riley,
Chairman of Trustees
The ME Association
