Connacht Tribune
Mystery illness that ruins lives
Lifestyle – After being treated for an infection 20 years ago, Orla Ní Chomraí expected to make to a normal recovery But she didn’t. Instead, she felt constantly tired and dizzy. Eventually she was diagnosed with Chronic Fatigue Syndrome, a condition which is difficult to identify and which divides medics. But with some 15,000 people in Ireland affected, the costs are high. Orla has played a key role in new research that shows the personal. social and economic impact of CFS, as she explains to BERNIE NÍ FHLATHARTA.
Orla Ní Chomraí’s life changed when she got an infection 20 years ago that left her with a disabling and complex chronic disease known as ME. But that hasn’t stopped her being one of the lead researchers of a national study into the economic impact of this long-term illness. Its findings are being published this month to raise awareness of Myalgic Encephalomyelitis (ME), which is also known as Chronic Fatigue Syndrome.
Orla was just 23 years when she got sick after completing her MA in Dublin (following an arts and history degree at NUI Galway). Once her infection had been treated, she was looking forward to a recovery, but noticed that she was constantly dizzy and fatigued.
“It went on and on and I didn’t improve,” says Orla who recalls going from doctor to doctor to find answers and a cure. She changed doctors and was eventually diagnosed with ME. Although she vaguely knew what it was and, in fact, knew someone who had it, she still expected to recover.
“My best period was a year into it after being diagnosed. I had a bad relapse in 2005 but overall, I live with flu-like symptoms and am fatigued all the time. It affects my concentration, my memory and my sleep. It’s very disabling and so very restrictive. My social life and career came to a stop,” she says.
And though ME is quite a common illness it is much misunderstood and often dismissed by medics, many of whom say it’s psychosomatic.
In fact, many of the people who took part in three focus groups for the research project – run jointly NUIG and patients from the Irish ME/CFS Association – shared similar experiences of not being taken seriously or believed by their GPs, of doctors and nurses admitting to not knowing much about ME and, worse, being told they were lazy or looking for attention.
Participants in the study, which began before the pandemic when people could meet physically, said they were years – three on average – waiting to be diagnosed. Even after being diagnosed, they found it difficult to secure social welfare payments.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is poorly understood, and routine diagnostic tests and biomarkers are unavailable.
Until this latest study, there had been no data on the economic impact of ME/CFS in Ireland but the material now collated suggests that there is a wide range of costs. These include the wider societal costs in the form of the health service; lost productivity and the impact on informal carers; and the sufferers’ own personal loss of work or a career.
This research, carried out by Orla and her fellow lead researcher, Dr John Cullinan, Senior Lecturer of Economics in NUIG, will inform an ongoing programme that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness among healthcare providers and policymakers.
For more, read this week’s Connacht Tribune.
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Significant state investment is required to address ‘shocking’ inequalities that leave cancer patients in the West at greater risk of succumbing to the disease.
A meeting of Regional Health Forum West heard that survival rates for breast, lung and colorectal cancers than the national average, and with the most deprived quintile of the population, the West’s residents faced poorer outcomes from a cancer diagnosis.
For breast cancer patients, the five-year survival rate was 80% in the West versus 85% nationally; for lung cancer patients it was 16.7% in the west against a 19.5% national survival rate; and in the West’s colorectal cancer patients, there was a 62.6% survival rate where the national average was 63.1%.
These startling statistics were provided in answer to a question from Ballinasloe-based Cllr Evelyn Parsons (Ind) who said it was yet another reminder that cancer treatment infrastructure in the West was in dire need of improvement.
“The situation is pretty stark. In the Western Regional Health Forum area, we have the highest incidence of deprivation and the highest health inequalities because of that – we have the highest incidences of cancer nationally because of that,” said Cllr Parsons, who is also a general practitioner.
In details provided by CEO of Saolta Health Care Group, which operates Galway’s hospitals, it was stated that a number of factors were impacting on patient outcomes.
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Galway 3-18
Cork 1-10
NEW setting; new opposition; new challenge. It made no difference to the Galway minor hurlers as they chalked up a remarkable sixth consecutive double digits championship victory at Semple Stadium on Saturday.
The final scoreline in Thurles may have been a little harsh on Cork, but there was no doubting Galway’s overall superiority in setting up only a second-ever All-Ireland showdown against Clare at the same venue on Sunday week.
Having claimed an historic Leinster title the previous weekend, Galway took a while to get going against the Rebels and also endured their first period in a match in which they were heavily outscored, but still the boys in maroon roll on.
Beating a decent Cork outfit by 14 points sums up how formidable Galway are. No team has managed to lay a glove on them so far, and though Clare might ask them questions other challengers haven’t, they are going to have to find significant improvement on their semi-final win over 14-man Kilkenny to pull off a final upset.
Galway just aren’t winning their matches; they are overpowering the teams which have stood in their way. Their level of consistency is admirable for young players starting off on the inter-county journey, while the team’s temperament appears to be bombproof, no matter what is thrown at them.
Having romped through Leinster, Galway should have been a bit rattled by being only level (0-4 each) after 20 minutes and being a little fortunate not to have been behind; or when Cork stormed out of the blocks at the start of the second half by hitting 1-4 to just a solitary point in reply, but there was never any trace of panic in their ranks.
For more, read this week’s Connacht Tribune.
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GARDAÍ and the IFA have issued a joint appeal to all road users to take extra care as the silage season gets under way across the country.
Silage harvesting started in many parts of Galway last week – and over the coming month, the sight of tractors and trailers on rural roads will be getting far more frequent.
Inspector Conor Madden, who is in charge of Galway Roads Policing, told the Farming Tribune that a bit of extra care and common-sense from all road users would go a long way towards preventing serious collisions on roads this summer.
“One thing I would ask farmers and contractors to consider is to try and get more experienced drivers working for them.
“Tractors have got faster and bigger – and they are also towing heavy loads of silage – so care and experience are a great help in terms of accident prevention,” Inspector Madden told the Farming Tribune.
He said that tractor drivers should always be aware of traffic building up behind them and to pull in and let these vehicles pass, where it was safe to do so.
“By the same token, other road users should always exercise extra care; drive that bit slower; and ‘pull in’ that bit more, when meeting tractors and heavy machinery.
“We all want to see everyone enjoying a safe summer on our roads – that extra bit of care, and consideration for other roads users can make a huge difference,” said Conor Madden.
He also advised motorists and tractor drivers to be acutely aware of pedestrians and cyclists on the roads during the summer season when more people would be out walking and cycling on the roads.
The IFA has also joined in on the road safety appeal with Galway IFA Farm Family and Social Affairs Chair Teresa Roche asking all road users to exercise that extra bit of care and caution.
“We are renewing our annual appeal for motorists to be on the look out for tractors, trailers and other agricultural machinery exiting from fields and farmyards,” she said.
For more, read this week’s Connacht Tribune.
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Download the Connacht Tribune Digital Edition App to access to Galway’s best-selling newspaper.
Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
Or purchase the Digital Edition for PC, Mac or Laptop from Pagesuite HERE.
Get the Connacht Tribune Live app
The Connacht Tribune Live app is the home of everything that is happening in Galway City and county. It’s completely FREE and features all the latest news, sport and information on what’s on in your area. Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
Families queue up for school’s offer of free house
West has lower cancer survival rates than rest
Galway minors continue to lay waste to all opponents
Gardaí and IFA issue a joint appeal on summer road safety
Marathon Man plans to call a halt – but not before he hits 160 races
