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
Covid lockdown returns for Kildare, Laois and Offaly
The Government has announced localised lockdowns for people living in Kildare, Laois and Offaly, following a surge in Covid-19 cases over the past week.
People from outside of those counties have been asked not to travel their unless for work or essential travel.
The restrictions affect travel, pubs, restaurants, swimming pools and cinemas.
Taoiseach Micheal Martin said the clusters of new cases were of serious concern and described the restrictions as “limited”.
“Over the past 14 days 292 cases of Covid-19 have arisen in Kildare, Laois and Offaly. These represent almost half of all cases detected in Ireland during that time.
“These measures are being put in place to protect the vulnerable in these counties as well as to stop the spread of the virus.
They are in place for two weeks from midnight tonight (Friday) until midnight on Friday, August 20. The situation will then be reviewed,” the Taoiseach said.
Travel and transport
You can only travel within your county, other than for the following reasons:
- to travel to and from work where that work cannot be done from home
- to attend medical appointments, collect medicines and other health products
- for vital family reasons, like providing care to children, elderly or vulnerable people, but excluding social family visits
- for farming purposes, food production or care of animals
You should not travel into any of these counties, other than for the reasons above, and you need to travel through these counties to get somewhere else. You should not stop in Kildare, Laois or Offaly unless for essential purposes.
Public and private transport
You should not use public transport unless it is absolutely necessary to do so, and where possible you should not share private vehicles with others from outside your household.
Education and childcare
The following services remain open with appropriate protective measures in place:
- education and childcare
- outdoor playgrounds, play areas and parks
- Economic activity and work
- Anyone in these counties who can work from home should work from home.
Cafes and restaurants
- All cafes and restaurants, including bars operating as restaurants, should only offer takeaway or delivery, or outdoor dining (maximum 15 people with strict physical distancing).
- Hotels can remain open but must limit occupancy to essential non-social and non-tourist reasons. Existing guests can remain for the duration of their booking.
- All indoor gatherings should be restricted to a maximum of 6 people from no more than 3 households in total, while maintaining physical distancing.
- Outdoor gatherings should be limited to a maximum of 15 people, while maintaining physical distancing.
Cultural and religious
- All cinemas, theatres, casinos, betting shops, bingo halls, gyms, leisure centres, swimming pools, exercise and dance studios are required to close.
- Attendance at a funeral service and burial or cremation ceremony should be limited to 25 outdoors. Indoor events connected to the funeral are limited to a maximum of 6 people.
- Places of worship remain open for private prayer, while services are to be held online.
No sporting events or matches should take place, with the following exemptions:
- non-contact training outdoors in a maximum group of 15 people may continue
- professional and elite sports and horse-racing may continue behind closed doors
- inter-county training (max 15 people) and fixtures may continue behind closed doors
Residential and healthcare facilities
*Visiting in long-term residential care facilities, acute settings and prisons will generally be suspended in the first instance with the exception of the most critical and compassionate circumstances (for example end of life).
Relocation homebuyers head to the west
The Coronavirus pandemic has encouraged a new exodus of homebuyers to relocate to the west, with remote working now a viable option for many employees.
Galway’s busiest auctioneer has noticed increased interest in properties in the city and county from workers relocating from Dublin, its commuter belt and the Midlands.
The availability of high-speed broadband, which can facilitate working from home, is a determining factor in many homebuyers’ decisions to move to the West.
But the high cost of renting remains the single biggest incentive for people to get on the property ladder, according to Niall Browne, senior sales negotiator at O’Donnellan and Joyce Auctioneers.
“People are paying such high rent that it’s the equivalent to a mortgage repayment and that’s when you buy. That’s the biggest incentive to buy – you’re not giving away dead money,” Mr Browne said.
The property market locally had quietened in the initial months of the Covid-19 lockdown – but it has been buoyant in the past two months in particular, he said.
Mr Browne suggested there was an element of pent-up demand for housing that was now being realised as the Covid lockdown restrictions focused people’s minds on their desire to purchase a home.
“We typically try to get eight to ten sales per month by private treaty, and we had 28 or 29 last month. The previous month was six and the previous month was eight. This month (July) we’re up to 26, and that’s outside of our auction,” he said.
Get the full story in this week’s Connacht Tribune, on sale in shops now. You can also purchase a digital edition here.
Nursing Homes shun student nurses over Covid fears
Student nurses in Galway are facing financial doom as part-time employers shun those currently on work placement in hospitals over fears they are at high-risk of contracting Covid-19.
First year nursing student at NUI Galway Ciarán Mac an tSaoir told the Connacht Tribune that this had become a particular issue for first and second year students who would traditionally take on healthcare assistant roles in nursing homes, where the fear of spreading the virus is at fever pitch.
“After semester one in first year, you are essentially qualified as a healthcare assistant and a lot of students would take that up as an option. Since Covid-19 came in, a lot of work places are fearful of cross-contamination and that’s not unjustified.
“It’s very understandable that a nursing home wouldn’t want a student who might be going between five or six clinical areas in an acute hospital to be then coming into work in the nursing home,” said Mr Mac an tSaoir.
Nursing students, for whom a large proportion of their university experience is spent on unpaid work placement, spend up to 35-hours a week in a clinical setting and so that could mean them travelling between a Covid-19-free setting of a nursing home to a respiratory word in a hospital such as UHG, he explained.
However, this wasn’t a HSE policy but rather the decision of individual care facilities who were doing their best to ensure coronavirus was kept out.
Get the full story in this week’s Connacht Tribune, on sale in shops now. You can also purchase a digital edition here.