Sussex ME sufferer: 'I had to give up my business'

BEFORE I became ill I used to manage a number of clubs and bars in Brighton and led a full and active life.

I became very ill in 1981 due to a mix of a viral illness and stress when I was running my own successful hotel business that I had to give up due to the physical and mental symptoms of the illness that often rendered me bedbound and in need of care. I well remember having to be helped around by our elderly housekeeper.

It took six years before I received the correct medical diagnosis after viewing the author and former yachtswoman Clare Francis interviewed on TV when she went public about having ME. I believe that this saved my life as by this time I was in a very sorry state of health and much of my capital had dried up due to being unable to work.

Although I am really much better now after learning how to manage the illness I still cannot function physically or mentally for any useful period of time and have to avoid stress. I had to accept that I would not be able to live as I used to and reduce my ambitions.

Although I felt rather let down by the medical profession I don’t believe I am bitter and am pleased that things have changed for the better over recent times for many people affected by the illness.

However, there is a long way to go before services are equitable to those provided automatically for others with chronic neurological conditions.

Myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS) that can sometimes follow a viral infection or trauma is classified as a neurological disorder by the Department of Health and the World Health Organisation and affects about 4,000 people across Sussex to varying degrees.

ME/CFS type illnesses have appeared in the medical literature since 1750. Indeed Charles Darwin and Florence Nightingale are thought to have had the illness. The disease has been known by many names worldwide over the decades including Royal Free Disease when ME was reported in The Lancet after an outbreak at London’s Royal Free Hospital in 1955. These days the illness occurs more spasmodically. Guidelines are available for the medical profession and some NHS specialist services are operational across the UK including those in Sussex.

Symptoms include profound physical and mental fatigue, concentration and working memory difficulties, muscle pain, sleep and mood disturbances along with gastric and vision problems.

The Sussex ME/CFS Society marked 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. 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 the Sussex NHS Specialist CFS/ME Service teams and national bodies including the British Association for CFS/ME and the UK CFS/ME Research Collaborative.

One of our main aims is to see those affected by ME/CFS lead the best lives possible. We aim to share reliable information to enable people to make decisions about how best their health and lives could be improved.

Fortunately, we continue to see a large number of our members obtaining a timely definitive diagnosis and receiving the best attention available.

This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also aware of many that have been less fortunate and continue to be seriously ill and housebound with a few virtually bedbound and in need of care.

An early accurate diagnosis is so important and can lead to better outcomes.

It is indeed welcome that we have a good NHS specialist adult service locally that was established in 2005 with help from our organisation and has experienced therapists working with a leading clinician. The Brighton-based NHS Children and Young people’s multi-disciplinary service is also helping youngsters and their families working with hospital consultants.

Research continues to progress with ME/CFS being the only medical condition for which the Medical Research Council has a dedicated Highlight Notice. In our county, the studies being carried out by the Brighton and Sussex University Hospitals NHS Trust and the Brighton and Sussex Medical School that were announced at a conference of ours and that members of ours are participating in are showing some interesting findings which will increase the biomedical understanding of ME/CFS and could help management strategies in the future.