A documentary about ME/chronic fatigue, which will be screened in Galway later this month, will strike a chord with local sufferers, according to Orla Ni Chomhrai, the co-ordinator of the Galway ME/CFS support group.
A free screening of the programme entitled Invisible will take place at the Pillo Hotel, Headford Road on Sunday May 22 at 2.30pm in a bid to heighten awareness about the condition and mark ME/Chronic Fatigue Syndrome Awareness Month.
“Patients’ stories about the challenges they faced as the illness turned their lives upside down, will resonate with many people here,” says Ms Chomhrai. “The financial difficulties, coping with disabling and confusing symptoms, and trying to explain it to others around them while they struggle to understand it themselves, will be familiar to people with this illness and their families.
“Being cut-off from their previous lives of work and study, and having difficulty maintaining friendships because of not being able to keep up, as well as often looking normal while feeling sick, causes the patient’s life to become almost invisible to the wider world.”
She says the film is not just about the negative impact of the condition. It is also about how people learn to adjust and cope with living with a chronic illness and find different ways of living their lives.
“The illness of course not just affects the ill people but also their families. Invisible also hears how families react and adjust to the illness, often being the mainstay of support for the ill person. Invisible gets across the reality of living with ME/CFS, shedding light on what is often hidden from public view. We see patients and their families not just as people who are suffering but also as people who use their inner strength and courage to adjust to their new lives.”
Patients often have problems getting diagnosed and receiving adequate or appropriate support due to misunderstandings and ignorance surrounding the condition, she outlines.
“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 alone.”
Vera Kindlon, the chairperson of the Irish ME/CFS Association, describes the documentary as “moving” and says it reveals the human story of ME/CFS.
“Interviews with patients and their families get across the devastation and havoc this illness can cause. Not only do sufferers have to deal with symptoms such as severe pain, flu-like symptoms, sleep problems, and concentration and memory problems but patients and their families often have to deal with disbelief and lack of understanding from others about the condition.
“Many people and families can also be hit very hard financially if the person with ME/CFS can no longer work due to illness. As they only have energy for a few activities they are forced to withdraw from their previous lives, spending a lot of time at home and often feeling invisible. This along with the nature of the disabilities gives the documentary its title.”
While there have been some improvements in the last decade many people still experience a considerable delay in obtaining a firm diagnosis, says Ms Kindlon.
“More research has been published in the last year which again showed that an early diagnosis greatly improves the prognosis. Without a diagnosis, relations with family and friends can be strained and arrangements with employers or schools become very difficult. Having a name for what is wrong with them allows patients to better manage their condition. They can also then get in touch with other sufferers, learning how others have dealt with similar problems and gaining support and empathy from those who know exactly what it is like.”
About 12,000 people in Ireland suffer from ME, now often diagnosed under the name chronic fatigue syndrome (CFS ). Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual exertion ), muscle and joint pains, sore throats, swollen glands, 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.
The cause of the condition is still unknown but 80 per cent of sufferers report an infectious onset - which is why it is sometimes called post-viral fatigue syndrome.
There is no known cure at the moment for ME which is recognised as a neurological illness by the World Health Organisation. However, patients may be able to get symptomatic relief for some of the symptoms. While some sufferers do improve over time, others remain significantly affected and disabled by their illness and have to carefully pace their activities in order to manage their lives.
ME/CFS affects men, women and children of all ages and backgrounds although it is rare in young children. It seems to occur mostly in people aged 20 to 50 years.
For further information or free information packs on managing and treating ME contact the Irish ME/Chronic Fatigue Syndrome Association, PO Box 3075, Freepost F4439, Dublin 2 or e-mail [email protected] or telephone (01 ) 2350965.
