"TEN years is a long time to be staring out the window counting leaves on the trees."
This was the reality for Newry woman Joan McParland whose life as she knew came to a halt in 1999 when she woke up one morning unable to work or get out of her bed. Joan went from being a “superfit” 42-year-old mum who enjoyed exercising and caravanning with her husband and 11-year-old son Stephen, to having to be carried from her bed to go the toilet.
She was eventually diagnosed with myalgic encephalopathy (ME), also commonly know as chronic fatigue syndrome (CFS).
ME is a condition that has greatly puzzled healthcare professionals for many years; it has even been debated as to whether it was actually an illness at all. While initially thought to be a psychological condition, and even given the nickname 'yuppie flu', understanding of the condition has improved. Indeed, the World Health Organisation now classifies it as a chronic neurological condition.
What cannot be agreed, however, is what type of treatment is appropriate for this debilitating illness, which usually develops when people are in their early 20s to mid-40s. If the symptoms are mild, some people can continue with work or study, but may need to sacrifice social activities in order to rest. If symptoms are severe, people can become seriously disabled and housebound. In some extreme cases, individuals have to be tube-fed to stay alive.
Symptoms include fatigue, poor short-term memory and concentration, painful muscles and joints, problems with sleeping, stomach pain, sensitivity or intolerance to light, alcohol and certain foods, psychological difficulties, problems with controlling body temperature and difficulty with balance. These vary from person to person and, while remission can occur, relapse is common.
There are more than 7,000 cases in Northern Ireland. However, there is no dedicated specialist ME service here and many patients here still endure a fight for diagnosis and acceptance.
Four charities offer peer support to ME sufferers in the north. One of the most vocal is called Hope 4 ME and Fibro NI, which also supports people with fibromyalgia, a long-term condition that causes pain all over the body.
Set up by Joan McParland from her bedroom, the charity has snowballed from a monthly meeting, to bringing over international speakers and empowering patients to fight for change and have a sense of hope for their future.
"I thought I was the only person on the planet who had this illness, until my family bought me a computer," says Joan, who still needs two hours' rest for every two hours of activity she has in a day.
Her advice to both ME and fibromyalgia sufferers is to listen to their bodies and pace themselves when doing physical and mental activity.
"Never underestimate the damage that can be done from trying to use energy your body can no longer produce," she says.
Hope 4 ME and Fibro NI meet on the first Tuesday of every month in Newry's Mourne Country Hotel, with meetings streamed live to their 15,000 Facebook page members, to enable those who are housebound to take part.
The group have been instrumental in lobbying and working alongside patient advocacy bodies the Pain Alliance NI and the Patient and Client Council.
The key need identified by the patients was to employ a specialist medical consultant to enable patients to get a reliable diagnosis, as well as to support GPs with the treatment and care of patients – and just last month a post for a consultant with interest in ME and CFS was advertised.
“Since 2013, the Patient and Client Council has been supporting people with ME/CFS to ensure their voices are heard by decision makers," says Louise Skelly, head of operations for the Patient and Client Council. "One of the key priority areas for patients has been for the establishment of a centre in Northern Ireland for the diagnosis and treatment of people with ME."
Of the new consultant post, Ms Skelly says the Patient and Client Council is "delighted this is currently happening".
While Joan McParland welcomes the development, she believes more should be done.
"Our charity still receive regular posts and phone calls from people saying they are suicidal and their doctor doesn’t believe them," she says.
Along with others in her charity, she wants to see proper education for all healthcare providers to dispel stigma and misconceptions surrounding the condition, as well as investment into research to provide a diagnostic test and effective treatment.
To celebrate ME & Fibromyalgia International Awareness Day, Newry City Hall will go blue on May 8 and there will be a Millions Missing display. This global campaign for health equality for ME suffers, which displays shoes of people who are 'missing' from pre-illness life and too sick to attend physical demonstrations, was started by Jennifer Brea, an American film-maker.
Her Sundance Film Festival award-winning film Unrest is an intimate portrait of how her life changed when, at age 28 and working on her PhD at Harvard while about to marry the love of her life, she was struck down with ME.
As well as screening the film to over 400 medical students at Queen's University Belfast, Hope 4 ME and Fibro NI will host a public screening of Unrest in Newry on May 8, followed by a expert panel discussion featuring Dr William Weir, a consultant in infectious diseases; Louise Skelly of the Patient and Client Council Northern Ireland; Dr Christine McMaster, specialist registrar in public health medicine and Dr Pamela Bell, chairwoman of the Pain Alliance Northern Ireland.
"Pain is a huge economic burden to the individual and society. Our organisation was set up in 2007 and since then we are delighted that chronic pain is no longer seen as a side issue but has become a feature within the health and social services," says Dr Bell.
While there are six general chronic pain clinics in six hospitals across Northern Ireland, long term the Pain Alliance NI would like to see more specific pain clinics set up.
"In an ideal world, we would like clinics for ME, gynaecological pain and cognitive impairment," Dr Bell says. She is passionate about engaging patients in shaping the services available to them.
"I would encourage patient groups to keep raising issues and asking questions of MPs and health trusts as, eventually, something happens. Even if your energy is limited and you are too sick to leave your home, you can use email to raise your voice. Your small act can make a difference."
:: For further information on Hope 4 ME and Fibro NI and to register for free tickets to the screening of Unrest documentary at Sean Hollywood Arts Centre, Newry on May 8 visit Hope4mefibro.org
