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
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