From the Ottawa Citizen, 16 September 2011. (Story by Julie Beun).
Chronic fatigue syndrome can turn a hopeful life like Shelley Shellin’s into one of suffering and pain. Although the disease is as common as diabetes, it is often misunderstood. It goes under the microscope at a conference in Ottawa in late September.
For 18 hours a day, Shelley Schellin waits.
She waits to have enough energy to get out of bed. She waits for her body to stop aching enough to get dressed. She waits for friends to stop by and keep her company during her long, lonely days. But mostly, she waits to restart the life that was stolen from her nine years ago.
But after nearly a decade of suffering from myalgic encephalomyelitis, or chronic fatigue syndrome (CFS/ME), so severe that it literally takes a day to recover from an hour of grocery shopping, the life of the strong, vibrant woman who was preparing for a career in natural medicine is now a stone-cold memory.
“It was a busy, hopeful life,” recallsSchellin, 42. “I had a small, close circle of friends. I worked, travelled, did normal activities. I loved going to craft shows and taking evening courses. I would go out for dinner with friends and visit my family outside of the city. Now, life is dramatically different. My dreams and goals are gone.”
It sounds like pitiful stuff, and it would be if coming from someone ending a tragic love affair. But for those suffering from CFS/ME, it’s almost a grotesque understatement.
Believed to be initially triggered by an infection, virus, vaccination, parasitic infection or reaction to environmental toxins, CFS/ME is more or less a dramatic overreaction by the body that puts it into a state of constant over-vigilance. “The majority of people say something like ‘I was at a Christmas party and 20 of us got the flu. Nineteen got better, what happened to me?’” says Dr. Alison Bested, Ontario’s leading expert, author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia (Cumberland) and a speaker at next week’s International Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Research and Clinical Conference, part of which is open to the public.
Typified by debilitating fatigue that lasts more than six months, along with muscle pain, aching joints, headaches, poor memory or post-exercise malaise, CFS/ME has no cure and can span a lifetime. In fact, according to an antipodean study of patients suffering from infections such as Red River Fever and mononucleosis, 10 years after the infection, 10 per cent had developed CFS/ME.
And it’s on the rise. While more than 500,000 Ontarians currently suffer from one of three related conditions — CFS/ME, fibromyalgia or multiple chemical sensitivity — nationally, Statistics Canada says reports of CFS/ME in the past five years have increased by an astonishing 24 per cent. Nor are they getting much help. Due to lack of knowledge about CFS/ME within the medical community, there are few specialists; Bested is one of a handful of Canadian doctors focusing in the area. Yet she is so overloaded, she had to close her private practice and now sees patients only at Toronto’s Environmental Health Clinic at Women’s College Hospital.
“It’s as common as diabetes, yet from a Ministry of Health perspective, it’s not even on the list of chronic diseases,” she says, pointing out that disability pensions can be very difficult to obtain. “It’s an invisible illness. I think in terms of patient populations, they’re getting sicker over time, because patients don’t take it seriously at first, since we’re taught to push through exhaustion and exercise more. But with this condition, you’ll literally push yourself into a crash.”
Schellin’s life unravelled after she developed a stomach infection several years ago. She lost weight, then noticed muscle pain and severe fatigue that never seemed to go away, no matter how many hours she spent in bed. Her doctors had no answers, and it wasn’t until she began to see environmental health specialist Dr. Jennifer Armstrong that the pieces fell together. The only U.S. board certified specialist in Ottawa — environmental medicine isn’t recognized in Canada — Armstrong currently has a three-year waiting list for new patients.
Part of the problem lies in how extensive a medical history must be to put together the triggers, symptoms and treatments. After two to three hours of taking a history, Armstrong literally has a checklist. Patients are told to clean up their living conditions — everything from getting rid of mould, carpets, paint cans, harsh cleaners, newspapers and other allergens to moving if they live under cellphone towers.
In many cases, an elimination diet that cuts out things like dairy, sugar, gluten and tap water is tackled next. “In the meantime, we do blood tests and look for vitamin deficiencies, any metabolic abnormalities and thyroid function,” she says.
“We look for evidence of infections like H. pylori or Epstein-Barr, which can be treated with anti-bacterials in the former case and anti-viral medication in the latter.”
From then on, it’s a case of wait, wait, wait and see. “If you see a cause and effect through the timeline, sometimes, things are quite clear and sometimes they’re not. Sometimes, a light bulb goes on, like the patient had their apartment sprayed for bugs 10 years ago,” she says. “It’s a puzzle and it’s interesting to put it together. Some patients want to puzzle it out and some are just too sick.”
For patients without access to the limited number of specialists, however, the case is more dire. And it is costly, since many of the tests and potential treatments are not covered by OHIP since there is no single diagnostic test for the condition. For example, measuring elevated cytokines — signalling molecules critical to the immune system — can more accurately assess inflammation, but the test is currently used for research purposes only.
“I’ve tried just about everything that’s come my way,” admits Schellin. “The really difficult part is that you’ve lost your financial stability and you’re looking at alternative treatments that aren’t covered and are extremely expensive. If you can manage to try it, you end up in a situation where you have to rely on the goodness of your family to pay for these treatments.”
The burden of health to Canada is even greater: based on a study by the U.K.’s Sheffield Hallam University, the bottom line cost to the Canadian economy is about $3.5 billion annually, while a U.S. Centers for Disease Control and Prevention study estimated that the loss of productivity per affected person is roughly $20,000.
Yet Bested remains hopeful that someday soon, all that will change. Recent U.S. research has linked CFS/ME to a potential retrovirus; the fallout is that the Red Cross and Canadian Blood Agency no longer accept blood from those with chronic fatigue syndrome.
“This was a real step in recognizing this as a physical illness,” says Bested, who adds that the Australian research linking CFS/ME to things like mononucleosis show “it’s an acquired physical problem. If it affects cell membranes and punches holes in them, well, guess what? Anything in your body could be affected. It’s a deregulation of the immune system.”
It’s a small comfort to Schellin, who spends her days so crushed by fatigue and inertia, she says she’s “entirely focused on survival. When I look back at my teen years, my attitude was ‘why would I want a day off when I can be making money?’ Now I can’t even relate to that. I look normal, even healthy. But I feel like my life is passing me by.”
Details of the IACFS/ME Ottawa conference HERE.