From the Health News Ireland website, 25 June 2013. (Story by Rory Halford).
Rory Hafford talks to Tom Kindlon, Assistant Chairperson of the Irish ME/CFS Association, about the systemic failure to effectively treat this ‘energy pirate’…
AT the age of 22 Tom Kindlon’s life stopped. His life didn’t end; it simply powered down and came to a gradual halt. And, no matter what he did to try to re-boot the battery, he could never get back to the person he was.
He’s 40 now and, like thousands of Irish people caught in the grip of ME, or Chronic Fatigue Syndrome (CFS), he is still searching for answers.
After he developed the disease, he went from being a healthy, active young man to someone who measures out his life in little pockets of time – all designed to save energy.
“I haven’t been to the top floor of the house in 14 years,” he says. “I haven’t read a novel in 17 years. I ration out the amount of TV that I can watch…”
Little measures designed to protect that most precious of things when you are in the grip of ME/CFS…energy. Today, almost 20 years after his life was turned upside down, Tom spends that energy in a very focused way. His main drive is to get to the bottom of this scourge and to help others navigate a way through and around it.
Examine the Implications
He is the Assistant Chairperson of the Irish ME/CFS Association and he has a right battle on his hands.
“You still get those in the medical profession who don’t accept the bona fides of the condition. And, the very mention of the disease can still evoke strong feelings among doctors, some of whom see us as people living off others…malingerers.”
He stops for a second to let the word hang in the air, in a bid to examine the implications of it. “GPs are better than Consultants when it comes to ME/CFS. A lot of Consultants don’t want us as on-going patients,” says Tom.
The real question is: why?
“It’s not an easy condition. There’s no easy test to help diagnose it. And, even when it is diagnosed, there’s no one specialty that can deal with it because the symptoms fall across so many specialities, like rheumatology and neurology…
“What we really need is a dedicated specialist who can dip into any and all the specialities that are required to treat this disease effectively. But we are nowhere near that.”
A recent Irish research paper (Comiskey & Larkan, 2010) found that there are no ‘definitive worldwide studies for ME/CFS’ and that it is believed that up to 90% of patients have not been diagnosed and are not receiving proper medical care for their illness.
The authors also argue that diagnosing ME/CFS is not straightforward because of a lack of a specific laboratory test.
It takes almost four years (3.7) for people with the disease to receive a definite diagnosis. For some, it takes a lot longer than that.
“In relation to ME/CFS, there is not much investment from the Government or the Department of Health,” says Tom. “For instance, we have no register to measure the amount of people who have the disease in Ireland; we have to extrapolate figures from other countries in order to get an approximate figure.”
Tom says that one of the great tragedies of this disease is, like most conditions, if it is caught early your chances of a successful outcome are greatly increased. But, with the way the system is set up in this country, early diagnosis is just not happening.
“I’m angry at the system,” Tom tells Health News Ireland, “more than with the individual doctors. In many ways, we are just the Cinderella of the health system. To a great degree, we are ignored.”
According to Comiskey & Larkan, people in the grip of ME/CFS would like to see three main things happen:
Increased awareness, understanding and diagnosis of ME/CFS by GPs
Increased awareness, understanding and diagnosis of ME/CFS by consultants
The provision of a national centre for education, research and respite care for sufferers
If Tom Kindlon had any advice, it would be this: “Take the illness seriously. And, remember, the more you push against it, the more it will push back…
“Manage it well.”