The article ‘When doctors cannot diagnose disorders’ (The Sunday Times, August 29), and letters and online comments written about it encouraged me to put pen to paper.
Dr John Greensmith’s input (September 19) is most mindful and judicious; it is based on learned foundations and backed by experience, and it contributes to intelligently disseminate more awareness about Myalgic Encephalomyelitis (ME) in Malta.
Recently I read an unpublished dissertation presented by Erica Camilleri to the Faculty of Education in part fulfilment of the requirements for her degree of Bachelor of Psychology (Honours) at the University of Malta (April 2010).
As far as I am aware, her study, entitled ‘Understanding Myalgic Encephalomyelitis (ME): Perceptions of Female Sufferers in Malta”, is the first in Malta to tackle the psychological implications of ME.
In her study Ms Camilleri explores the daily experience of women living with and suffering from ME. It gives an insight into their perceptions of their condition. More specifically, different aspects of sufferers’ lives are investigated. It evaluates their physical difficulties as an effect of their frequent pain and fatigue and the resulting limitations.
Their sufferings brought about by the stigma as a consequence of lack of awareness, sometimes even within the immediate family circle and society in general, are also discussed in the study, as are the changes which ME causes in the quality of life or any modifications that eventually had to be adopted.
The impact of the illness on ME sufferers and their emotional reactions that gave rise to frustration and anger for losing one’s career, the great sense of helplessness in failing to continue with one’s usual chores and the pain of seeing one’s everyday responsibilities being shifted and burdened onto others are demonstrated and examined.
Ms Camilleri observes that ME sufferers experience great suffering in the form of frustration, anger and especially self-doubt. At the onset of the illness, primarily at diagnosis stage; some of the professionals visiting a sufferer fail to identify the underlying problem, mostly due to the lack of training about and awareness of the ailment. The patients’ sensations, perceptions and ultimately their very rationality are often questioned.
Other people often do not listen to what sufferers have to say and consider them a complaining lot or that they imagine things. The author states that when dealing with ME sufferers one needs to have a great deal of patience.
Suffering from ME is already an indignity in itself and therefore those with ME ask others not to compound it. It is already a great anguish for ME patients to be aware that no cure exists. Besides research into what causes ME, further research is needed, for example into the financial difficulties encountered by sufferers.
Research regarding the social policy adopted by government, employers and other organisations/agencies in understanding ME sufferers is also suggested.