People can learn more about ME/Chronic Fatigue Syndrome tonight (Thursday ) when a short series of videos about the condition will be shown at the Westwood Hotel at 7.30pm.
The event is being organised by the Galway ME/CFS Support group as part of Myalgic Encephalomyalitis/Chronic Fatigue Syndrome Awareness week.
Admission is free and family, friends, and sufferers of ME/CFS are all welcome. Tea and coffee will be served afterwards and people will have an opportunity to chat and catch up.
Filmed by UK ME patient Giles Mehan, the videos, each lasting between four and nine minutes, explore what it is like to live with the condition.
Some of the videos are mostly directed at people with the condition, such as “Newly Diagnosed with ME” while others are aimed at family and friends and explain about the illness and what it feels like to be a sufferer. There is also advice on how to be a supportive friend to someone with the condition.
Orla Ni Chomhrai, the co-ordinator of the Galway ME/CFS Support Group, says the videos are some of the best she has seen.
“The idea to show these videos came from someone in the group asking if there was any good information that could be given to friends and family to explain the illness and the impact it can have on day to day activities. I thought of these videos and then realised that they would be very useful to show for the awareness week as they might help other people explain what it is like to their family and friends.
“Personally I think that these videos are some of the best I have seen explaining what the illness feels like, what the common symptoms are, and what impact the condition has on people’s day to day life. This can be great for the person with ME/CFS to see as they realise that they are not alone in facing these difficulties. The videos can also be of use to help friends and family understand the common problems sufferers face because of the illness.”
She outlines it can be difficult for non-sufferers to “grasp what the illness is like or the many difficulties the sick person might have to deal with”.
“Sometimes there can be misunderstandings as the patient can often look well in spite of feeling very sick or as the illness fluctuates they can be able to do things some days and not others, or be out doing something and then suddenly they need to stop to go and rest. This situation can put a strain on friendships and relationships, as sometimes the person with ME/CFS needs to cancel planned activities, or regularly refuse invitations, or leave in the middle of some event, or even cut a conversation short because of poor concentration and energy levels.
“Watching these videos may help build a greater understanding as to why this happens and how the many symptoms can impact on so many aspects of the patients’ lives. The non-sufferer can also see that these problems are common to many people with the illness and not unique to the person they know with the condition. Not being able to participate in activities in a ‘normal’ way doesn’t mean that the person with MS/CFS doesn’t value the relationship but are the result of the patient having to deal with the restrictions that the illness and its symptoms imposes on them.”
About 12,000 people in Ireland are thought to have ME. The exact cause of the condition remains unknown. However, 80 per cent of sufferers report an infectious onset (which is why it is also sometimes called post-viral fatigue syndrome ).
Symptoms include muscle and joint pains, sore throats, swollen glands, dizziness, disturbed sleep, impaired concentration and memory, and headaches. A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.
She states that patients often have problems getting diagnosed and getting adequate or appropriate support due to misunderstandings and ignorance surrounding the condition.
“Raising awareness helps educate the general public about the condition and the impact it can have on sufferers’ lives. It is also useful for people to find out that there are others out there experiencing similar problems, and that there are patient support groups, as it helps them feel less isolated.”
ME/CFS affects men, women and children of all ages and backgrounds, though it is rare in young children and seems to first occur mostly to people in the 20 to 50 age group.
There is no known cure at the moment for the condition although patients may be able to get symptomatic relief for some of the symptoms. While some sufferers do improve substantially over time others remain significantly affected and disabled by their illness and have to carefully pace their activities in order to manage their lives.
For further information telephone or text Orla at (086 ) 2353497. A free information pack is also available from the Irish ME/CFS Association. Telephone (01 ) 2350965 or e-mail [email protected] org or write to PO Box 3075, Freepost F4439, Dublin 2.