30 Years of Caring

1987 – 2017

colinbartonColin Barton – Chairman
The Sussex & Kent ME/CFS Society marks its 30th anniversary during 2017. The organisation was founded in 1987 when people got together supported by Hospital Consultant, Dr Keith Hine and Brighton MP, Sir Andrew Bowden MBE. The Society that has helped thousands affected by the illness was granted charity status in 2000 and developed into one of the most successful regional ME charities in the UK. Over the years we have served on a good number of national and local committees and working groups and continue to work with NHS Specialist CFS/ME Service teams and national bodies including BACME and CFS/ME Research Collaborative.

 

skirbySimon Kirby MP
I offer my congratulations to the Sussex & Kent ME/CFS Society on this, their anniversary. It is an excellent achievement and I commend the great work the organisation has done since its formation. I know many peoples’ lives have been improved by the work of the ME/CFS Society which provides such a valuable service. Since being elected as the Member of Parliament for Brighton Kemptown it has been my privilege to be a Patron of the Society, and I look forward to continuing to support the society in the future.

 

neilrileyME Association (UK) – Neil Riley
The ME Association is delighted to send its best wishes and many congratulations to Sussex and Kent ME Society on its anniversary. Starting from just a few members, the hard work of its committee has built the Society into an organisation that has helped thousands of people in Southern England who over the years who have suffered from ME. Colin Barton and his team put in long hours and huge effort to bring relief to ME patients and to get across the message to the public that this illness is a truly life changing one. They have worked tirelessly to help in a practical way, looking for treatments that may help. They have campaigned for medical services for people with ME and have formed a close working relationship with service providers in their region. I have known Colin for many years. He and the team behind Sussex and Kent ME Society can be rightly proud of what they have done. Like all the charities devoted to people with ME, it is the passion and the work of the individuals and their supporters within those charities that make the difference. Well done to you all in Sussex and Kent.

jennyseagroveActress Jenny Seagrove
Congratulations to Sussex & Kent ME Society on reaching this grand age. That’s many years of giving people hope and help and advice! ME is still greatly misunderstood and although it’s not referred to any more, in those awful, disparaging tones, as yuppie flu, there is still a long way to go in terms of understanding the devastation it wreaks on peoples lives. How it can come from no where and literally stop you in your tracks. Some of my friends who have suffered with it, have turned their lives round, but I know of plenty of people who haven’t and my heart goes out to them. Charities, like everything else, are suffering in these tough economic times, but somehow they have to find a way to keep going. It’s too important- the work they do. There are too many people depending on them for their day to day survival. So I wish SMES great good luck for the next 30 years. They are wonderfully well established and no doubt will go from strength to strength, but not without the hard work and total dedication of a team of people, dedicated to helping those in need. Well done to you all. Give yourselves a great big pat on the back.

Sussex CFS/ME Service Team (NHS)
Congratulations to the Sussex and Kent ME association on many years of hard work and tireless campaigning and fundraising on behalf of people affected by CFS/ME. Countless people have benefited from their advice and support delivered by regular informative newsletters and local groups. Their regular medical conferences attract keynote expert speakers working in the CFS/ME field. Colin Barton (as lead of the association) takes a keen interest in the Sussex CFS/ME service and shares latest medical research ideas with us. He works hard to make sure the patients voice is always heard, by speaking on their behalf with MPs and the press. Long may their hard work continue.

maryjanewillowsAYME – Mary-Jane Willows
The Association of Young People with ME is delighted to congratulate everyone at the Sussex & Kent ME Society on your anniversary. The Society has built up a commendable record of providing support to those whose lives are shattered by this condition. The Society has also built a highly regarded reputation for campaigning on behalf of those living with ME/CFS and for its members to receive the appropriate provision of health and welfare support they are entitled to and for promoting the need for more research. AYME is proud to stand beside the Society and its enviable record for its and for relentless awareness raising in the Sussex and Kent area, making life with ME/CFS more understood by the general public and professionals. Sadly there is still a great deal to be done and the role of the Sussex & Kent ME/CFS Society remains profoundly important. AYME will continue to work alongside you in the journey towards achieving proper recognition and diagnosis of the condition, sensitive and supportive treatment in health, education and social care and extensive research and development into useful therapies for all those affected.

esthercrawleyProfessor Esther Crawley
What a wonderful achievement! Congratulations to the Sussex and Kent ME Society on your birthday. You have done such a wonderful job helping patients, engaging with services and supporting research. I hope that by continuing to work together, we can really make a difference to patients and their families in the next few years.

 

 

mikeweatherleyMike Weatherley MP
The Sussex & Kent ME/CFS society is a wonderful charity which has provided a valuable service to communities across the region over the past few years. I want to congratulate and thank all those involved. I know that a small team of dedicated volunteers work tremendously hard to keep everything running so well and they deserve our continued support. It is important that the issues raised by the society are heard in Parliament, so I will ensure that this will carry on for years to come.

 

suepembertonBritish Association for CFS/ME (BACME) – Sue Pemberton
I would like to congratulate the Sussex and Kent ME/CFS Society on its work over the past few years. For those of us who have been clinicians in the field of CFS/ME over that time we understand the challenges that this has presented. Despite the fact that scientific knowledge around the condition has only been slowly emerging over that time, the need for people to find support and a reliable source of information has always been vital. The work done by groups, such as Sussex and Kent, is a valuable lifeline for the many people who feel alone in the wilderness. They have worked collaboratively with the NHS and other organisations to find ways to help people and to provide them with a voice. I wish them the best for the future.

mariovergarawilliamsonKent & Medway CFS/ME Service – Dr Mario Vergara-Williamson
We wish to send our congratulations and warmest thanks to Sussex and Kent ME Society on reaching their anniversary. Since its inception in 1987, the organisation has campaigned tirelessly to champion the needs of people with ME/CFS. Colin Barton and his small team of volunteers have provided practical advice and support at a time when there was little recognition of the condition and few other services available. In addition to the monthly newsletter, Sussex and Kent ME Society has continued to run conferences on a regular basis, which have raised the profile of ME/CFS both at local and regional levels. The Society has been instrumental in the development of NHS services and we value their ongoing support enormously. We would like to wish Colin Barton and SKMES continued success and we hope they go from strength to strength in the coming years.

mauricemurphySt Bartholomew CFS/ME Service – Professor Peter White and Dr Maurice Murphy
The CFS service at St Bartholomew’s hospital are pleased to congratulate the Sussex and Kent ME/CFS Society on the occasion of its anniversary and 100th edition of its newsletter. The Society has helped many people with CFS and ME, and their carers, over these 30 years. We particularly admire The Society for helping to set up and continuing to support both the Sussex and Kent services for people with this illness. The Society has never been afraid to publish the facts as it sees them, without fear or favour; members can therefore trust the information given. Long may you continue your good work.

 

gabriellemurphyDr Gabrielle Murphy
It is an honour to be associated with the Sussex and Kent ME/CFS Society. It has a robust history of service to the membership in a climate where ME/CFS has been regarded as a Cinderella illness. Thankfully much has changed in the last few years, with the activity of such a society playing a significant role in that change, both at central and local levels. In cost sensitive times an illness without an identifiable cause will always prey to the first cutbacks and the work of the society will increase, and be an ever more important voice for specialist service provision and funding, and not least a haven of hope for those affected by the illness. Congratulations on your journey so far, and strength for the next leg.

alanstewartDr Alan Stewart
Well done to Sussex and Kent CFS/ME Association. They have done an excellent job supporting a very disadvantaged group who now can benefit form good advice and tried and tested treatments. The information and advice provided by the Association has been excellent and this has played a significant part in improving the health of individuals but also bringing better understanding to a wider audience. The information and digests of medical papers that I have received have been invaluable. As a result of these efforts CFS/ME is taken much more seriously and the latest research is beginning to provide real hope for those who have been badly affected.

 

peterspencerAction for ME – Sir Peter Spencer
I am delighted to see that the Sussex and Kent ME/CFS Society is the same age as Action for M.E. and that both organisations celebrate their birthdays this year. My warmest congratulations to Colin and all members of the Society on this memorable occasion. Local groups play a crucial role in providing face to face support and encouragement to people with M.E. and in engaging with local service providers. This is very evident in the achievements of your group. I congratulate you on all your fine work to date and wish you every success as you embark on your next quarter century.

 

keithhineDr Keith Hine
So this is the anniversary of the Sussex and Kent ME Society. It is an anniversary that should be celebrated. The Society has done so much to raise the awareness of CFS/ME in Sussex and it has lobbied extensively to increase the provision of care. I have no doubt that the Society will continue to be a major force in the years ahead. Many happy returns!

 

 

lesliefindlayProfessor Leslie J Findley
I would like to congratulate the Sussex and Kent ME/CFS Society as they approach their birthday. I would also like to take this opportunity to thank them on behalf of the many people with CFS/ME who have gained support and encouragement from their efforts.

 

 

carolinelucasCaroline Lucas MP
As a patron of the Sussex & Kent ME/CFS Society, I am delighted to be able to join you in marking the organisation’s anniversary. With over 12,000 adults and children affected by Myalgic Encephalopathy/Chronic Fatigue Syndrome in Kent and Sussex, and around 3,000 of these though to be virtually house-bound, the Society’s work has never been more necessary. Through providing key services, information and generating new strength of the Sussex & Kent ME/CFS Society and its hard working volunteers that after so many years, the organisation continues to play such a crucial role in the lives of patients across the region. And in this, your 100th newsletter, I wish you all the best for what I’m sure will be a very successful future.

 

andrewbowdenSir Andrew Bowden MBE
Hearty congratulations on the 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 a member of parliament for Brighton Kempton and was most impressed by the 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. I have been pleased to remain a patron to the charity and wish you all well for the future.

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