Neil Riley presented his first report as Chairman of the Board of Trustees to the Annual General Meeting in Bicester on 17 February, 2007.
This is what he had to say:
It is now just over 30 years since the organisation now known as The Myalgic Encephalopathy Association was formed. The little acorn that started growing in a room in a house in Stanford le Hope in Essex is now a fully fledged oak in a modern office in Buckingham. Though the size and locality of your charity has drastically changed, the reason why we are here has not. The reason is you, our members. We are still fighting, as our founders did, for ME/CFS to be more widely recognised as the debilitating physical illness it is. We are still giving support and information to thousands of people with ME/CFS and their carers and families. We are still funding research into the causes of the illness. That’s why we are here.
I have been chairman of the ME Association for almost 15 months. It has been the busiest time in my life since I first became ill with ME some 20 years ago. There has been a constant flow of work for the Board and Staff, generated by the Gibson Report, the NICE Guideline on ME/CFS, the DWP Guidance and a host of other matters.
Let me first give credit to the wonderful team we have at the ME Association. At Head Office, Gill Briody, Lucy Kingham, Peter Crisp and our volunteers – John, Anne and Donald – work so hard in keeping our charity functioning so efficiently. At our Helpline Service, ME Connect, Hilary Briars and her volunteers, provide a first-class information and support service. Our Quarterly Magazine, ME Essential is produced by our highly professional editor Tony Britton, who also deals with fundraising and several other tasks that are vital to the Charity. As always we owe a huge debt to our unpaid Medical Advisor and Trustee, Dr. Charles Shepherd, an Internationally recognised specialist in the field of ME/CFS, for the many hours he gives to your charity. The Board of trustees recognise that we are very fortunate to have such capable and dedicated people to work for all our benefit.
During the last year your charity has been involved with some major issues:
The Canadian Guidelines Following a debate in ME Essentials on the pros and cons of these Guidelines, a majority of members voted in favour of our charity adopting them.
The Campaign for an ME clinic in Wales There are no treatment/management clinics in Wales whereas there are in England. We think this is wrong and a campaign to change this was launched in November 2005 by ex-Chairman Christine Llewellyn, with the support of your charity.
The Gibson Inquiry This was the brainchild of Dr. Ian Gibson MP, who set up a committee of other Parliamentarians to examine evidence on ME/CFS. The ME Association, through Dr. Shepherd and Beth Llewellyn, gave evidence to the Inquiry, along with many other ME Organisations and individuals. The Report of that Inquiry, published in November 2006, contained many good recommendations including the one that this Association has always argued for: that there should be massive investment in biomedical research.
The Department for Work and Pensions: new medical guidance. This will replace the current medical guidance on ME/CFS in the Disability Handbook. This is of huge importance to many of our members. The Handbook is one of the key sources of information that Decision Makers at the DWP, who are not medically qualified, make use of when they are assessing claims for Disability Living Allowance and Carer’s Allowance. The bias in the drafting of the guidance towards the psychosocial model of causation and management of this illness and a failure to properly refer to research that supports an organic basis is simply unacceptable. The main ME Organisations have been involved in a tremendous struggle with the DWP guidance panel to get the draft Guidance altered. So far there have been nine drafts of this Guidance and we continue to fight to get it changed.
The NHS Plus Leaflets for employers and employees There are three leaflets in this series, which summarise the findings of a review of the scientific evidence on the occupational aspects of the management of chronic fatigue syndrome. The leaflets reflect unquestioning support for the psychosocial model of the illness and strongly imply that the illness is "all in the mind". Your Association is leading a group of ME/CFS Organisations in preparing a response to these leaflets. Our aim is to get them withdrawn on the grounds that their tone, their sweeping generalisations and their failure to present a balanced view of the illness, renders them inadequate and potentially dangerous.
The National Institute for Clinical Excellence (NICE) This medical organisation produced a draft Guideline for ME/CFS. Yes, yet another Guideline in addition to those previously mentioned. This is a crucial Guideline as it will set the pattern for assessment and diagnosis by your GP and all other medical professionals. With its emphasis on Cognitive Behaviour Therapy and Graded Exercise, we believe that this Guideline is "not fit for purpose". NICE appears to have largely ignored patient experience. All of the ME Community has commented unfavourably on the Guidelines and our medical advisor led the way in preparing a detailed response. As Chairman, I met and chaired a meeting of eight National Charities at which we agreed a joint Statement on the Guidelines, pointing out its major flaws. I was delighted that stronger and closer links between the ME Charities were forged in the discussions leading up to our joint Statement and I hope that it will be the fore runner of closer collaboration between the charities.
Research is a great passion for your charity and we continue to support new research into the possible causes of ME/CFS. Our funding of Professor John Gow’s research study into gene expression is still in place. Professor Gow has now moved to Glasgow Caledonian University where there is a great deal of interest in and appreciation of research into the illness. We will continue to report on the progress of the research in the charity’s magazine, ME Essential.
Our Medical Meeting at Chester was a great success. A large audience listened first to our main speaker, Dr. William Weir, and then posed many questions to our Medical Panel. These meetings, which all interested in finding out about ME/CFS can attend, give members an opportunity to meet many of the trustees of our charity and find out more about it. The Association will be organising a further meeting in the coming months and details will be published on our website and in the Magazine.
Our new website is now up and running. We hope that this will provide a greater insight into the Charity and what it offers for all those who suffer from ME/CFS and their carers. My thanks to all those who have contributed to making this website happen, especially Colin Harbour who designed and developed it. Colin’s sister, Sue, has ME and works as a volunteer for MEConnect so you can see how involved many families are, giving their time and efforts to help their loved ones who have this illness.
Our award-winning Support and Information Service (ME Connect) continues to go from strength to strength. Thanks to a three-year Department of Health grant, ME Connect now has its own training and information website, has conducted telephone training conferences on a wide range of subjects and continues to produce new information leaflets.
Mrs Angela Flack It is with great sadness but also with great pride at having known her that I have to record the death in January this year of Angie, as we knew her. She was a lovely lady. Full of fun, she gave most of her time to your charity. On her "bad" ME days she would still struggle into the office to attend Board Meetings; she had brought her own comfy fully-reclining chair to help her get through the long day. On her good days, she would be organising fund raising events and always telling people about ME and what they could do to help to raise awareness. We shall miss Angie.
The Future for your Association is good. Our financial situation is steady and we are looking at ways of generating more funds. Although the membership subscription has been raised to £18, the cost of providing each member with the Magazine and the many other services that we offer is £35. The shortfall is at the moment met by the generous donations, fundraising activities and the legacies that we receive. The Board is very mindful of all the money that is spent and we really do run a lean organisation. No trustee is paid and many forgo expenses. The office is carefully managed.
My wish for the coming year is that stronger links are formed between the ME Association and all the wonderful Support Groups we have in the UK. They are at the core of giving comfort and care to those in the community that are suffering from ME and I believe it is to the advantage of all people with ME that the Groups and your charity work closely together. We shall do all we can to see that it happens. In the words of our mission statement "We are here to Support. Here to Inform. Here to fund Research. It’s what we do".