“My life experience dictated that infections were short-lived and resulted in a full recovery. Nobody prepared me for a life of chronic ill-health.”
Aaron Greenaway quoting Russell Fleming, Cornish & Devon Post
Summary
- Russell Fleming, a former investment banker, developed Myalgic Encephalomyelitis (ME) after contracting a virus on holiday at age 29, which led to debilitating fatigue and other symptoms, ultimately leaving him bed-bound for a period.
- After struggling with a lack of medical support and facing emotional and physical challenges, Russell found a turning point through a specialist who understood his condition, leading to a slow stabilisation of symptoms and a better quality of life.
- 25 years on, Russell now works for The ME Association as the Head of Project Development, adapting to his condition by working from home with flexible hours, supported by family, a team, and his dog, Buster.
On the 30th of March, Cornish and Devon Post published an article interviewing Russell Fleming, the ME Association's Head of Project Development, about his experience of living with ME/CFS for the past 25 years.
Extracts
Mr Fleming said: “I had joined Lloyds Private Banking from College and transferred to Jersey as part of a senior management development programme. I specialised in investment management and managed private client portfolios. Aged 29, I had a good social life and was physically in my prime, running each day along the beach before work. In 1999 I took a last-minute holiday abroad with friends. It was incredibly hot and we played a lot of beach volleyball. Towards the end of the break, I became acutely ill with an infection that led to seizures and from which I never fully recovered.”
ME left Russell feeling as if he had lost his identity, with tasks many might take for granted, such as going for a walk leaving him feeling debilitated and disabled. In turn, combined with a loss of cognitive ability meaning even reading words on a page became a challenge, it led to feelings of anger, grief and blame, particularly when trying to ‘fight’ for access to treatment.
“I didn't learn to manage my symptoms very well and would try to push through even when my body was screaming not to. This led to a very erratic period of relapse and relative remission that persisted for a long time. It took ten years before my symptoms would stabilise and eventually start to improve.”
However, due in part to his determination and the support of people around him, Russell has now been able to work around his condition as the head of project development for The ME Association, something that came after relapses in his condition disrupted his attempts to finish university or work elsewhere.
He said: “The big difference for me is that I have achieved all of this by working from home. I couldn't do this if I had to work in an office and commute. The charity are flexible employers which means if my symptoms are bad, I can adapt my working week.”
“Restless sleep tends to mean I start work early at 7am and work until 2pm unless I have later meetings. I choose to work and to do so means that I have a support system around me. I have a housekeeper, a gardener, and parents who are minutes away. I finally have a dog, Buster, and if I am unable to take him for a walk, I have people around me who can.”
He added: “It robs a person of their vitality and identity. There are large numbers of people who are unable to recover fully from an infection. Providing appropriate care and support has become a real concern and something that The ME Association and others are working hard to address with the Department of Health and Social Care. Society is more aware of these chronic conditions than at any time in history. The ME Association will continue to provide support, advocate for healthcare improvements and invest in medical research. More research is needed if we are ever to develop preventative measures and effective treatments.”
Russell Fleming
Head of Project Development,
The ME Association
