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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

Connacht Tribune

Adults and young pupils collaborate on children’s book now in the shops



A new book – a collaborative collection of stories and poems written by the Oughterard Writers Group and the children from the local primary school – was officially launched in style last week.

Tell me a Story was officially launched at Scoil Chuimín agus Caitríona, Oughterard, by the principal, Micheál O’Domhnaill – to the delight of the children, parents, friends and writers in attendance and those watching live on zoom.
by Jess Walsh and Barbara Dunne
Tell Me a Story is a collaboration between the Oughterard Writers Group and the children of last year’s 4th class from Scoil Chuimín agus Catríona. It had its genesis in January when the writers applied to Galway County Council for funding for the story book.

The book is the culmination of several months’ work, where stories and poems written by the writers, were sent to the children.

The group was unable to meet the children in person, due to Covid restrictions, but met them several times on Zoom, facilitated by Pete Mullineaux, and James O’Donnell, their teacher. And after months of hard work by the children, their handwritten work and illustrations were then passed back to the writers for design and completion.

Each story in the book tells a different tale. The children responded to the story they liked best, and the book is interspersed with wonderful drawings from the children, with new story endings and poems, along with some of the children’s own handwriting.

It was a special night for all to finally meet in person at the official launch.

The children were presented with their contributor copy by the writer of the piece they worked on, and guests were treated to some selected readings from the book by the children themselves.

The evening was rounded off by Muinteoir J O Donnell reading his poem, Last Night’s Wind from the book, and it was a very fitting ending to a wonderful evening.

The book costs €10 (with 50% of profits being donated Scoil Chuimín agus Caitríona) and can be bought online from Kenny’s and Charlie Byrne’s bookshops in Galway, and from Moycullen Bookshop and shops in Oughterard.

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Connacht Tribune

Landowners see red at poor greenway dialogue



A decision on the route chosen for the greenway between Athlone and Galway City is expected to be announced before Christmas – despite the vehement opposition of a group of landowners.

Opponents staged another protest outside County Hall last Monday to up the pressure on councillors to continue to voice disquiet over the way the project is being pursued by Galway County Council and RPS consultants.

Jean Molloy from Stoney Island outside Portumna, a member of the East Galway Action Group, said there was a complete lack of respect by the project team for the major stakeholders who had the most to lose – those whose land would be taken by the greenway.

Her family, who run a small farm on the land earmarked for the route, had received two letters from the team and not a single phone call over their concerns. She had attended public meetings to outline their preferred route but believes the consultants are not listening.

“We’re expected to give up everything but yet we don’t see a real benefit in the way the route is going as it doesn’t connect villages or neighbours, our kids can’t use it to cycle to school,” she insisted.

“The preferred route is in remote areas off-road, which may suit tourists a few times a year but won’t be safe for us. Why can’t they go along the road, as long as it’s segregated? Yet, we’re expected to give up our livelihoods, our privacy, our security.”

The campaigners allege the process has been flawed from the start.

They accuse those driving the project of “underhanded” tactics and adopting a “divide and conquer approach” and say consultants have failed to engage with every landowner and resident affected in the route corridor. They allege the team is refusing to meeting landowners in groups.

“They have told landowners that a final route is to be released before Christmas, but this is just not feasible. It’s important that the general public is made aware of how the individuals at the centre of the proposed cycleway are being treated.”

Director of service in the infrastructure and operations unit of Galway County Council, Derek Pender, has refuted claims of intimidation and a lack of engagement.

Last September he insisted they had undertaken well over 1,500 face-to-face or phone call consultations with 350 potentially impacted private landowners over 15 months.

The preferred route starts near Ballyloughane Beach, east of Galway City, passing through Oranmore, Rinville, Clarinbridge, Kilcolgan, Kinvara, Gort, Woodford, Portumna, Meelick, Clonfert, Ballinasloe, Shannonbridge, and finishing at Athlone Castle before linking with the cycleway to Dublin.

He claimed there was support for approximately 90% of the route and that the so-called hybrid model – where the cycleway would go along a national or regional road – would only be used in discreet isolated areas that were specific pinch points.

Cycleways beside long stretches of road were not safe, he has previously contended.

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Connacht Tribune

Clifden roster dispute escalates despite HSE recruitment



Staff at both a hospital and nursing home in Clifden are balloting for industrial action over changes to the rosters – despite a targeted recruitment campaign for nurses that has resulted in over 20 applications.

Last week Clifden District Hospital – beset by critical staff shortages – closed for four days with the HSE claiming that no patients were booked into the facility with respite and step-down beds for recuperating patients who can be medically discharged from an acute hospital but deemed not well enough to go home.

This was the same week when the HSE admitted that 4,662 bed days were lost at University Hospital Galway (UHG) and Merlin Park and 1,295 at Portiuncula Hospital in the first nine months of this year due to delayed discharges.

The HSE said the four days could be used by staff at Clifden District Hospital and St Anne’s Community Nursing Unit to take leave accrued due to overtime they had built up over filling in shifts due to a lack of workers.

Anne Burke, Galway industrial relations officer for the Irish Nurses and Midwives Organisation (INMO), said the union did not accept there was no demand for beds in a facility such as the Clifden District Hospital.

“They have orchestrated this downgrading of the hospital because we believe they want it for another purpose which they have not yet revealed. If you don’t advertise you’re open for business you won’t get the business. We think they don’t want it to be a viable option,” she exclaimed.

“They have always told us that staff weren’t interested in coming to Clifden. But there was no meaningful recruitment. Now, finally, they advertised specifically for jobs in Clifden, and we have been told that 29 applications were submitted and 21 are deemed eligible for interview, which we understand will take place next week.”

The INMO and SIPTU [Services, Industrial, Professional and Technical Union] are to ballot members from the two facilities for industrial action next week over changes to the rosters.

They claim the HSE is breaching the Building Momentum public service agreement which requires changes to rosters to be done by agreement between management and staff. A previous memo withdrawing the staff right to seven uncertified sick leave days was rescinded following lengthy talks at the Workplace Relations Commission.

Over 700 people attending a public meeting last September over fears Clifden District Hospital was being closed by the HSE. The hospital has had 12 beds for patients since the Covid pandemic, down from 30 some years ago.

After meeting with local politicians, the organisation issued a press release stating the facility would not close but said the respite and step-down services “remain on a day-to-day footing” due to staff shortages.

“The HSE has agreed to meet with GPs in the Clifden area to discuss the needs in the community for respite and step-down beds.”

They also announced they would run a ‘bespoke’ recruitment campaign for nurses.

The INMO estimates that seven additional nurses are needed for the hospital and a further six are required for the nursing unit to maintain rosters.

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