Well folks it's twenty years since our organisation was founded in 1987. So much has happened over the time since we started off with a handful of people meeting in a draughty church hall in Brighton when Sir Andrew Bowden became our first patron. Other local groups soon joined us and the Kent ME Society merged with us after we became a registered charity in 2000 making us a regional concern. We have been supported by the National Lottery and now have approaching one thousand subscribed members across Sussex and Kent. Your society has developed into one of the most successful regional organisations in the UK and is highly regarded both locally and nationally.

The society has organised hundreds of meetings and conferences, one being the second largest gathering of ME/CFS patients ever held in the UK chaired by Clare Francis at Hove Town Hall in 1992. We have been involved at the highest level taking part in the Chief Medical Officer's Working Group for ME/CFS and the Medical Research Council's consultation process. We have served on the national ME Association's board of trustees and Action for ME's Patient Involvement panel as well as the PRIME project advisory group and the Primary Care Trust steering groups of both Kent and Sussex.

Our MP patrons David Lepper, Des Turner and Celia Barlow are members of the All party Parliamentary Group and indeed Des is the current chairman and we have contributed to the recent Gibson Inquiry that is made up of sympathetic members of the House of Commons and the Lords.

Our society has probably got the most eminent medical advisory panel in the country including Prof Tony Pinching and Prof Leslie Findley. Consultant, Dr Keith Hine has supported us for years and Dr Kamal Patel is a leading paediatrician in the field. Dr Alan Stewart is one of he UK's top nutritionists and Dr Susie Rockwell is a well thought of GP and medical homeopath. We have also produced the highly regarded guidelines for professionals written by Dr Charles Shepherd and arranged Post Graduate lectures for groups of GPs. The Sussex and Kent CFS/ME specialist NHS Services that we helped set up continue to develop and are staffed by teams of committed professionals that have seen hundreds of patients already.

Our charity has been shortlisted for the Argus Charity of the Year Award and we received a BBC South's Community Champions commendation in 2005.

Many thanks has to go to all the people that have given their time over the years serving on our management committees, Development and Focus groups as well as acting as telephone contacts, holding house meetings and running special interest groups etc. Some members have also taken part in public awareness exercises and stood outside supermarkets rattling tins. Special acknowledgement has to go to David Butler who has worked tirelessly and quietly over the entire twenty years keeping the ship afloat in all weathers.

The Spring and Summer editions of your newsletter include pieces written by our advisors and patrons reflecting on the last twenty years. Hope you enjoy these two special newsletters and thank you for your continuing support.

Warm wishes

Colin

Prof Leslie J Findley
It gives me great pleasure to congratulate you on the 20th Anniversary. As one of he oldest ME/CFS Societies in the United Kingdom you have had an important influence increasing the awareness of CFS/ME. In addition, your group has underlined the necessity of providing appropriate services in the community. There is still much work to be done, however, the Sussex & Kent ME/CFS Society is a beacon. I was delighted last year to become one of its advisors. Congratulations on your 20th.

Hearty congratulations on the twentieth anniversary of the Sussex & Kent ME/CFS Society's foundation.

I remember well meeting with Colin Barton and his colleagues for the first time in the eighties when I was member of parliament for Brighton KempTown and was most impressed by their commitment. Much has been achieved over the years for people with M.E. in the area as well as nationally and the society's work continues a pace.

Looking back, looking forward.
Professor Tony Pinching
Medical Advisor; Sussex & Kent ME Society
Associate Dean for Cornwall, Peninsula Medical School

I congratulate the Sussex & Kent ME Society on your 20th anniversary, and acknowledge your many contributions to progress during these years, locally and beyond.

Although the ME field does have a tendency to look back a bit too much, it can sometimes be useful to reflect on our past in order to recognise progress and the contributions of those who have helped to achieve it, not just to celebrate that important work, but also to learn how to make a difference, for the years ahead.

20 years ago, I started to see increasing numbers of patients from Sussex. I think that this may have resulted from conversations between founder members of what is now the Sussex & Kent ME Society! Although I wasn't doing anything very special to justify the long journeys, I did my best to help, whilst listening carefully for clues. Soon after, we got a "block contract" for the Sussex work, consolidating the informal link; this also implied that patients and GPs couldn't then access specialist help more locally. When I moved in 1992 to Barts, this referral pattern moved with me, and was joined by those from Kent, as well as those from East London, Herts and Essex. I was pleased to be asked to be Medical Advisor, and also to give a number of talks in the area. I tried to help discussions with health planners to get more locally based services.

My move to Cornwall coincided with the Programme to set up new CFS/ME services across England, a project that I initially led. This has enabled the development of local services in Sussex, Kent and many other areas that previously lacked them. The Society contributed actively to the national Programme, as well as locally.

So what are my personal reflections on how CFS/ME has changed over 20 years? Overall, there has been tremendous progress, especially in the past 10 years. Yet there are many areas where progress is still limited.

Awareness of CFS/ME generally and among health professionals has improved greatly. It is taken seriously among ordinary folk, and media coverage is much more appropriate. Government has given it recognition, as well as acknowledging past failures. It has taken specific steps to foster research (with Medical Research Council), to enhance services (through the Service Investment Programme), and to raise awareness and care standards among health professionals (through the NICE process). Whilst there is still much to do in all these areas, there has been a major step forward and an impetus for more.

The quantity and, above all, the quality of research have improved palpably in recent years, though more investment is needed. The new services have filled most, but not all of the gaps in specialist provision in England, and are starting to help GPs and other clinicians to diagnose and treat more promptly and appropriately. The national team represents a major step change in care for CFS/ME, and are now starting to lead development of innovative care models for chronic illness (that's a first for CFS/ME!). The NICE guidance (once suitably revised) will help to raise standards and give consistency to care, despite the relative dearth of high level research evidence; CFS/ME has helped NICE to develop new methods to gather consensus in such a setting.

Patients now, through a variety of resources, can much more readily access good quality information about their illness, eased by modern communication technology. This, and much else, has resulted from the emergence of a range of strong, influential national and local advocacy groups, increasingly connected with colleagues internationally and with the emerging science.

The progress in these areas has largely been achieved by people with different backgrounds and perspectives working together in partnership. This hasn't been easy. It has been about focusing in areas on which people can agree (much more than had been realised), accepting the need for compromise and mutual respect, and being able to move on from the undeniable hurts, failures, misunderstandings and injustices of the past.

Much still remains to be done however, and many aspects need improvement.

Most patients still encounter major problems with a seemingly hostile, humiliating and uncomprehending benefits system, and similar problems with pensions, insurance, etc. Although intended to support people with chronic illness and disability, the processes are so focused on preventing abuse or fraud that they alienate and disadvantage the very people they are designed to help. System failures create additional burdens for patients as well as a diversion of health resources in correcting them. Although there is now a willingness to improve things in principle, the practical obstacles are still real. Many painful and raw experiences understandably limit the willingness of some to engage in dialogue and to compromise.

More generally, there remain plenty of foci of ignorance and prejudice to overcome. Many substantial gaps in knowledge remain. Service provision needs further expansion and depth. Expectations of new treatments repeatedly fuel high hopes, often followed by cruel disappointment. Despite enormous progress in many ways, there is much to do.

The CFS/ME field is sadly characterised by disputatiousness between groups and individuals, often over things that are not soluble or yet achievable. Personalised attacks and cyber-gossip, combined with some misleading polemic, can undermine progress, alienate people and inhibit partnership.

Constructive engagement, which can certainly be robust at times, as now exemplified by most ME groups (such as your own), achieves more. It also wins hearts and minds.

Many thanks for all your excellent work so far. Good luck in what remains to be done to improve the future prospects for people with CFS/ME - through enhancements in treatment, care and support, from wide-ranging research, and as a result of societal change.

Professor Anthony J Pinching, Peninsula Medical School, February 2007.

Many congratulations to all involved in the Sussex ME/CFS Society on reaching 20 !

My introduction to the Group was in the early 1990s when as Mayor of Brighton was invited to a packed meeting at Hove Town Hall to hear an inspiring talk by yachts-woman and novelist Clare Francis.

What I heard that afternoon from local people with ME/CFS made me aware for the first time of a whole range of problems - from the attitude of unsympathetic GPs, to the frustrating obstacles in the benefits system for people with a condition which can be intermittent, to the lack of research.

Locally the Society has definitely put the needs of those with ME/CFS on the agenda of the regional health authorities and our city Primary Care Trust and this has helped to inform the debate at the Parliamentary level.

My special thanks to Colin Barton and his colleagues who have kept me and other MPs briefed on the searching questions to put to Ministers and officials about the Royal Colleges Report, Department of Health and General Medical Council Research and now the National Institute for Clinical Excellence Guidelines.

I look forward to continuing to work with the Society.

"It's all in your mind"…. "you're imagining it all"…. "go and get a life"…. "I don't believe in ME" - such were the responses given by doctors to patients with Chronic Fatigue Syndrome when I was first appointed as a Consultant Physician at Cuckfield Hospital in 1984. Fortunately, the intervening years have seen some improvement, although there is still some way to go!

My own introduction to CFS/ME occurred on my first weekend in Sussex in 1984. My local GP asked me to do a domiciliary visit on a patient with "probable myalgic encephalomyelitis". I headed straight for the books

(no internet in those days) and read up, particularly about the Royal Free outbreak. I then went to visit the patient. Jack (not his real name) held a very responsible job and was under a lot of stress. He had contracted a 'flu-like illness and this was followed by profound fatigue which had "pole-axed" him. He had been off work for over a year. Clinical examination was entirely normal and routine investigations also yielded normal results. I told Jack that he probably did have "ME" and advised him to slowly increase his exercise. Twenty-two years later I still see Jack socially from time to time and he has made a complete recovery from his illness, although that did take several years. This experience stimulated my own interest in the condition and over the years I have seen several hundred patients with similar stories, although not always the favourable outcome that Jack had.

Twenty years ago, there was a reluctance of the medical professional to accept CFS/ME as an entity, mainly because nothing could be measured. VP1 antigen was identified by Professor Mowbray and attracted a lot of attention. However, the initial enthusiasm for VP1 as a diagnostic test for CFS/ME was not substantiated and it soon fell from favour.

It was against this background that a group CFS/ME sufferers in Sussex founded the Sussex ME Society in 1987. At that time there was little encouragement for them from mainstream medicine but the membership grew. Professor Tony Pinching who was based at St Bartholomew's Hospital in London was a great encouragement and some local specialists, including myself, also provided some support for the group. Regular meetings took place and these served to disseminate knowledge of the condition and its management as well as being a forum for mutual support, advice and help. Special groups were spawned to cater for more personalised needs (e.g. parents of patients; young people).

I think 2002 was a major turning point, both nationally and locally. The Chief Medical Officer appointed a group of experts to report back to him on CFS/ME. This report was published in 2002. Some people may have real criticisms of the report but it was a major milestone since CFS/ME was at last acknowledged as a genuine illness. The Department of Health recognised that there was a lack of provision for suffers from CFS/ME and set aside central monies for establishing 13 clinical network co-ordinating centres and 47 multidisciplinary clinics. A total of £8.5 million was ring-fenced for these developments. The Sussex ME Society was instrumental in helping to establish a local multidisciplinary clinic based in Mid-Sussex with outreach to other centres around Sussex. It was well recognised that there was a genuine need for these multidisciplinary clinics but it has become evident over the years since their establishment that the funding is insufficient to meet the needs. It has been estimated that there maybe as many as 5,000 adults and children in Sussex affected by CFS/ME and up to 20% of these are virtually housebound. The local Sussex ME Society continues to lobby for even better provision for these patients. At present the waiting time for a clinic appointment is 18 months and then it maybe another 18 months before any specific therapy is instituted.

The Sussex ME Society has since merged with the Kent Society to form the Sussex & Kent ME/CFS Society. Its role continues to be one of informing, supporting and representing patients. It achieves these aims through meetings, its informative website, newsletters and helplines. The number of specialist interest groups continues to grow and are able to provide more specialised support as needed. Not only does the society inform patients but it is also instrumental in informing local medical professionals about current research into the causes and management of CFS/ME.

This year sees the publication of some national guidelines on the diagnosis and management of CFS/ME from the National Institute of Clinical Excellence (NICE). This will be another milestone in the recognition of the condition as a genuine entity and will encourage more doctors to give appropriate advice and management to their patients. Meanwhile, we continue to be grateful to the Sussex ME Society for all its endeavours over the years in getting CFS/ME recognised and managed appropriately within Sussex.

Dr Keith R Hine MD FRCP

into the mainstream. This will continue with the impending NICE guidelines.

For all those who had hypothesized on "encephalopathy" with hypothalamic dysfunction as the main problem, research appears to show their ideas to be about right, and is now the accepted understanding of the cause of the varied symptoms. Although studies have also repeatedly demonstrated an immune dysfunction in CFS/ME patients there remain considerable gaps in our understanding of its meaning. Still some further understanding waiting to be gained. Over the last twenty years there has been a shift in the aims of research to include more of the biology of the illness. I think this reflects an understanding of the condition in a more holistic way, encompassing the biological, psychological and social aspects.

In my opinion, CFS/ME responds to a holistic approach which includes all three of the above. The use of medication and complementary and alternative medicines (CAM) such as acupuncture and homeopathy to address for example pain, disturbed sleep and flu-like symptoms can help. Medication (both allopathic or herbal) on its own is not enough and is unlikely to address other symptoms such as reduced appetite, anxiety, low mood or feeling faint. These symptoms appear to respond to "energy management" which includes pacing and "targeted, individualised, incremental physical rehabilitation". They can also respond to what we may call psychological approaches. In my opinion a psychological approach exploits one's natural ability to self heal and helps remove barriers to this natural process. However it's effectiveness and use remains hampered by an unhelpful perception. That the use of psychological techniques implies a stain on one's character or a personal weakness that seems unacceptable. This perception is deeply seated and is reflected in the phrase "the British stiff upper lip" - a useful trait for colonising the world but maybe not for overcoming CFS/ME. CAM therapies naturally incorporate some of these psychological techniques within their holistic approach. I think there is a lesson to be learnt.

Education and social development occur mainly at school in our modern education system. Support at school helps not only attain educational goals but equally importantly promotes a healthy development of identity and self. The scepticism sometimes shown by educators and fighting allegations of truancy remain very challenging. But enormous progress has been made in this field. Whereas ten to fifteen years ago understanding of the condition and the support required to help a pupil with CFS/ME was unusual, it is now much more commonplace. I remain impressed by many schools whose staff provide such support. The challenge of how much school attendance and how much home education to start with has been uniquely addressed in our service using information from a survey conducted in 2000 of a thousand teenagers by The Open University. I use this information as a guide and it has worked well.

Finally, the work done by patient support group remains invaluable. For example, I am provided regular updates on research publications by Colin and his team at CFS/ME Sussex & Kent which I do not have the time to find myself. Their support will be vital for the future plans for the Children's & Young People's CFS/ME Service throughout Sussex to succeed.

Dr Kamal Patel is paediatric advisor to The Sussex & Kent ME/CFS Society