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Connacht Tribune

ME sufferer outlines reality of debilitating illness

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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

Connacht Tribune

Locals in fundraising drive to protect some of Connemara’s finest beauty spots

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The world-famous beaches Gurteen Bay and Dogs Bay will disappear unless work is carried out immediately to save them for the next generation.
A local conservation committee has been set up which is fundraising to carry out the work in September. They plan to remove the old fencing from the headland, which is dangerous for people and animals.
They will also want to install new fencing on the headland to keep animals off the sand dunes and to have clear access pathways to people to enjoy the dunes without causing them damage.
Sustainable chestnut fencing is then needed to re-establish the sand dunes and to save them from further collapse.
Finally the hope to replant marram grass to further stabalise the dunes.
Kieran Mullen, owner of the Gurteen Bay caravan and camping park, explained that the work was so urgent that they cannot wait another year to carry it out.
“Atlantic storms are becoming more frequent and powerful. If they find a weakness in the dunes a one metre gap is created. The next storm that widens to two and three metres and soon they’re gone forever,” he remarked.
“I know people might say I’m doing this because they’re part of my livelihood but these beaches are key to the bigger economy of Connemara. Everyone’s tied into tourism here – the shops, the builders. It only takes one influencer to post a picture on Instagram and the next week the place is packed.”
His father Pat, along with James Conneely and Joe Rafferty, undertook extensive projects such as planting marram grass, erecting fencing and stone gabions along one section of Dogs Bay beach back in the 1990s. They managed to protect and regenerate part of a highly degraded dune system.
“If it wasn’t for the huge amount of work they did back then, the beaches wouldn’t be here today. There was an Italian electrical company who came in and took away 50 tonnes of sand and my father stopped them at the gate and made them drop it off.
“They filmed Into The West here and the film donated some money to the beach and that’s how they paid for a lot of the work.”
The committee is meeting with planners to secure an exemption on planning for the work.
“Time is not on our side so that’s why we’ve gone ahead to raise the money and hope to get it done in September when the place is quieter.”
Both beaches, located outside Roundstone, regularly make the list of top 100 beaches of the world by travel guides.

To make a donation, visit GoFundMe page.

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Connacht Tribune

Galway passengers are all smiles at Shannon!

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Shannon Airport
Shannon Airport

The smiles on the faces at Shannon Airport very much told its own story this week – with passengers taking to skies as the easing of restrictions and the first day of the European Digital COVID Certificates took effect.

And it wasn’t just the joy of travel starting to resume that lifted spirits at the airport but also the announcement by Ryanair of a new once-weekly service to Gran Canaria (Las Palmas) to commence on August 7 – the third new service announcement for Shannon Airport over recent weeks.

There was a real sense of excitement as passengers of all ages became very much at ease with the heightened public safety measures in a ‘back-to-the-future’ day for the West of Ireland gateway airport.

There were reunions as inbound flights arrived but also a palpable degree of anticipation as others got set to depart on the earliest flight out of the airport today, the 7:10am flight to Gatwick.

Among those boarding was Clarenbridge native Claire Tomlin and her husband Jake, together with their three children, including their twins who turn a year old next week.

“It’s been amazing to get back. The kids saw their grandparents for the first time and their cousins and aunties and uncles, so it was fantastic,” said Claire.

“Shannon is just so convenient for us because it’s only about 40 minutes’ drive. So, it just makes everything a lot easier in terms of getting to and from places with little ones. So, yeah, Shannon is a great resource for us. Really, really good. We hope to be able to go back more and more.”

It was smiles all around for Shannon Airport staff as they got back to doing what they do best. “Well, today is a great day because you can see the atmosphere around the place, people are at ease here and they’re glad to be back, they’re glad to get up in the sky again,” said Shannon Duty Free Sales Associate Helen Quinlivan.

“It’s great to see the excitement. People are really looking forward to going back and seeing their loved ones and they’re very at ease.”

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Galway in Days Gone By

Galway In Days Gone By

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A man lies on a bed of nails at the opening of Galway Shopping Centre, Headford Road, on October 26, 1972

1921

Silence is golden

Leaders on both sides have stated that the best assistance the country can give in the making of peace is to keep silence.

During the past week there has been a great deal of speculation, most of it harmless enough, as, for instance, the enterprising American journalist’s “exclusive” on the first meeting of the British Premier and the President of the Irish Republic; much of it positively mischievous, as the case of the efforts of a certain journal, which has grown hoary in the reputation for throwing in the apple of discord, to anticipate failure in advance.

Our American colleague was on surer and on safer ground when he told of how de Valera and Lloyd George met.

“Mr. Lloyd George,” he cabled, “was sitting at his desk when the Irish President entered. For just a minute these two gazed fixedly at one another. Then the British Premier walked across the intervening space and shook de Valera by the hand. He led him to a seat where they sat side by side. The atmosphere was tense. They faced one another. Then Lloyd George reached down for a box of cigars. But the Irish President is of Spartan mould. He neither permits himself to drink nor smoke. He politely but firmly waved the box away. Mr. Lloyd George, however, selected and lighted a Havana, and as the smoke curled upwards the atmosphere became decidedly easier!”

Good planning

The wise and practical man always lays by a store against the time when supplies will be scarce. One of the most serious effects of the prolonged drought is the scarcity of supplies of fodder for cattle-feeding during the coming winter and spring.

The hay crop is not more than half the average yield. The corn crop is far below normal. Turnips in many districts are a partial failure. We have frequently emphasised the importance of growing catch-crops to supplement other feeding stuffs raised on the farm, but it is only under circumstances such as the present that their utility is brought home to farmers. Owing to the early harvest, a larger area than is usual can and should be put down this season. This would make good, to some extent, at least, the shortage of hay and other feeding-stuffs.

The demonstration plots laid down by the County Committee of Agriculture have shown that catch-crops, such as vetches and rye as well as other mixtures, can be successfully grown in all parts of County Galway.

We would urge on farmers the desirability – nay, the necessity – of procuring seed and making early preparation for the sowing of an increased area of catch-crops this season.

For more, read this week’s Connacht Tribune.

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