Connacht Tribune
ME sufferer outlines reality of debilitating illness
Marie Curran often has trouble reading and walking—at the age of 36. The well-spoken Colmanstown native used to work in finance, but five and a half years ago she was struck with Myalgic Encephalomyelitis (ME), a debilitating neurological disorder also known as Chronic Fatigue Syndrome.
Around 14,000 people in Ireland are thought to suffer from the illness. “It’s horrendous,” says Marie. “I classify as a moderate patient. So there are patients who are far more severely affected than me, who literally cannot leave their beds. For me, my symptoms vary.”
These include severe fatigue, bone pain, brain fog, inability to concentrate, bouts of dizziness, insomnia, headaches, nausea—the list goes on. And it all started with a regular old head cold back in 2011.
“That’s kind of how it starts for most patients—it starts with a viral infection and then we don’t seem to get better.”
Like most people with a cold, Marie just took some over-the-counter drugs and went in to work anyway.
“I wasn’t unwell enough to not go to work,” she explains. “And that just deteriorated into the early days of 2012.” She was given antibiotics for sinusitis and took a few days off.
But after the cold disappeared, something had ‘gone haywire’ – and by that February, she was forced to reduce her hours; she was in and out of her GP’s office for weeks.
Eventually, Marie says, it got to the point where “I made phone calls to [my GP] saying ‘I can barely open my eyes, I don’t know what’s going on, I can’t read emails…’ and she just stopped me, and said ‘It’s time to see a consultant. There’s something more sinister going on here.’”
All the while, work was a nightmare. “I was struggling. I was misposting money, I was making huge mistakes, taking naps on my way to and from work, falling asleep at my desk…I had reduced my hours to four, but most days I only worked about two.”
She finally received a diagnosis in April 2012. But unfortunately, ME is still poorly understood, even among the medical community.
The cause is unknown, and there is no known treatment or cure. And with no known biomarker or diagnostic test available, the only way to diagnose someone with ME is to rule out every other possible ailment.
So Marie considers herself lucky.
“Some patients can go for years trying to find somebody to diagnose them…or a lot of patients are misdiagnosed, because unfortunately some doctors don’t run all the tests that need to be done—and they will make up their own mind that you’re suffering from depression, or suffering from something else,” she says.
“There is an element of doctors in Ireland who refuse to accept that ME exists—that it’s an actual physical illness. And so I have heard of patients who have talked to GPs, and [after testing] the GP has said ‘There’s nothing wrong with you…go home, don’t be bothering me again, you’re on your own.’”
But even after diagnosis, the path is far from clear. Marie says, “I looked for empathy, I looked for somebody to say ‘we need to understand this a bit better’. And instead I just got told to push through it. Unfortunately, that’s actually the worst thing an ME patient can do.”
This is because ME sufferers can ‘crash’ up to 48 hours after physical or mental exertion. “We will just completely fall to the ground…and we’ll deteriorate quite rapidly,” she says matter-of-factly.
Marie describes a study—the PACE trial, published in a well-known and highly regarded medical journal—in which psychiatrists claimed to have proven that exercise could be useful in treating ME.
But exercise often makes patients with ME worse, not better. According to Marie, there were major problems with the data used in the study.
“Thankfully, within the last six months that information has been completely debunked…So now finally people have started to move away from the idea that it’s a psychiatric illness as opposed to what it actually is – a neurological illness.”
The Irish ME/CFS Association is hosting a talk by leading ME expert Dr. Ros Vallings in Galway on May 24 for ME Awareness Month.
But countering misinformation and changing people’s attitudes is an uphill battle.
“The symptoms are horrendous, but people’s attitudes can be really hurtful as well. You really do have to be strong at times to put up with what’s said to you,” Marie says.
She knows that people mean well, but being told to take a multivitamin or just shake herself up is extremely frustrating.
“One person actually took me by the shoulders and physically shook me. They were lucky I wasn’t suffering from nausea that day, because they could have been in serious trouble,” she laughs.
Marie says there’s no excuse for the lack of understanding from the medical community.
“It’s 2017. It’s not good enough to have just a handful of doctors that you’re lucky enough to see to get diagnosed. Every doctor in the country should be well equipped to diagnose ME and support their patients.”
And unless a cure or effective treatment is discovered, she expects to suffer from the condition for the rest of her life.
“There’s never a day when ME takes a day off. It’s always present. There are days when my brain is so muddled that I can’t even think of words,” says Marie.
“My poor husband has to look at me as if I’m doing charades half the time, trying to figure out what it is I want…or I’ll find myself down in front of the cooker going ‘how do I work this again?’ It’s an incredibly frustrating illness.”
For more information, see the ME/CFS Ireland website
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.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
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.
Connacht Tribune Digital Edition App
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Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
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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
