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how to live (and prosper) with chronic fatigue syndrome

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After years of being misdiagnosed and misunderstood, the disease known as Chronic Fatigue Syndrome is finally starting to be taken seriously. Mary Lou Zeitoun describes her own history with CFS and her determination to get healthy.

I am typing this wearing my bathing suit under my clothes. I’ve been preparing for four days to take a bus a few blocks to the pool to swim. In high school, I trained every morning and walked into class on winter days with frozen hair. Now, it takes me four days to take a bus because I have ME/CFS, a.k.a. myalgic encephalomyelitis, a.k.a. chronic fatigue syndrome—except CFS has fallen out of favour, it's like calling Parkinson’s disease "chronic shakiness syndrome." Myalgic means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Basically, I have had the flu for years.

Did you hear the one about the ME support group? Nobody showed up.

According to the National ME/FM Action network—which includes fibromyalgia because it’s in the same spectrum—over 700,000 Canadians, 72 per cent of them female, suffer from this little-understood neurological illness. In the ’80s, it was called Epstein-Barr after the virus that causes mononucleosis. But we now know that many viral infections can precede ME/CFS because its patients have an immune dysfunction and tend to develop allergies to medications and foods. It was once dubbed Florence Nightingale Disease, since many believe the Victorian nurse was an early case. And it may or may not be related to environmental toxicity. My own symptoms started when I went home to Ottawa after university. My sister was there too, and she had a bug. I didn't catch it, but I did get a strange, dry flu. I remember being baffled, lying on the couch watching TV as my mother asked, “Do you have a fever? You don't look sick.”

This is a common onset of the disease, according to Dr. Alison Bested, co-author of Hope and Help For Chronic Fatigue Syndrome and Fibromyalgia, who spoke at an ME awareness event in Toronto in May. "Over and over I hear the same story," she says. "'I went home for Christmas and we all caught the flu. Everyone got better. I never got better.'"

Eventually, my symptoms receded, but every two weeks for a year I got that flu again. My favourite perfume suddenly made me feel sick, and cleaning products nauseated me. Then I basically just lay down for two years. I lay down in clubs, I lay down on sidewalks. After exhaustive doctor's appointments ruling out thyroid issues, MS, mood disorders, allergies, Lyme disease and lupus, blood tests showed I had increased amounts of cytokines, a biomarker of ME/CFS. The Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health recently identified these immune changes as evidence that ME/CFS is a biological, not a psychological disorder, contrary to popular opinion. But we still know little about it, and are far from finding a cure. "We are just learning the alphabet at this point," says Bested.

There could not have been an illness less suited to my sociable, physically active self. And my first approach to fighting it was thinking that if I got incredibly strong, I would feel it less. So I hired a personal trainer, but even though I gained strength, both of us were dismayed at the amount of downtime one exercise session cost me. I became a writer, and after much trial and error, I found that I could write for a few hours every morning, and if I stayed in bed for two days, I could go out for one day. This approach to energy expenditure, called pacing, is a vital part of the disease's management.

I became a theatre reviewer and a music journalist and even published a novel. But ME is like having a taser pointed at you, ready to go off the second you do too much. “Post-exertional malaise" is one of the markers of the disease. The aches and exhaustion can hit you like a wall or spread through your body like spilled ink on white sheets. You are bedridden but, because you're not bleeding, vomiting or limping, you bear the shame of being judged that most horrible and peevish of persons, the hypochondriac.

Laura Hillenbrand, the award-winning author of Seabiscuit and Unbroken, is a widely known ME sufferer. "I began to feel deep shame because I was the target of so much contempt,” she said in a December 2014 New York Times Magazine interview. A 2010 Washington Post profile reported on her pacing: "On one day, she might agree to an interview but skip a shower. Energy is finite, and she typically has enough for one activity a day. She is constantly monitoring herself."

A paper published earlier this year by the Institute of Medicine in the U.S. acknowledged the difficulties ME sufferers experience, reporting that "patients frequently complain that their health care providers do not know how to deliver appropriate care for their condition, and often subject them to treatment strategies that exacerbate their symptoms."

"I have seen ME patients who have been given the same advice as people with fibromyalgia and depression—aerobic exercise," says Heather Robinson, a certified athletic therapist at Women's College Hospital who works with ME patients. "This usually worsens symptoms, because ME patients don't tolerate long periods of aerobic work and have significant symptoms for days if not weeks afterward.” Robinson recommends limiting activities to about two minutes, and resting for 3-5 times as long before doing something else. So in the pool, I do one lap and then rest.

The many naturopaths, homeopaths and Chinese herbalists I went to in my quest to manage ME were as disappointed as I was when I got no relief, and each failure got me closer to depression. I was eventually referred to the Environmental Health Clinic at Toronto's Women's College Hospital, where, after being examined for other diseases, I received some helpful short-term talk therapy. "Often, people with ME/CFS have symptoms that appear to be allergic,” says Dr. Lynn Marshall, education liaison and staff physician at the EHC. “And perhaps they are, because, as the body burden of environmental hazards becomes overwhelming, people with ME/CFS tend to develop allergies as well."

Finally, after years of resisting meds, I allowed a rheumatologist to prescribe me an antidepressant often used for fibromyalgia. In two months, I gained 50 pounds, tore my ankle and my knee and needed surgery. I lasted six months, and experienced painful withdrawal symptoms. Then I reconnected with my trainer and nutritionist, Melissa Putt of Healthy Habits Nutrition and Fitness Consulting, who is working on an emerging field centred around body alignment and massaging the fascias, the thin sheathes of fibrous tissue enclosing muscles, bones and organs. She gave me a treatment that made me feel light and strong for hours. I started practising a fascia-activating yoga called Tensegrity, which builds core muscles, and did find some relief. And I’ve taken off most of the weight gain with yoga and calorie counting.

I am lucky: Many ME patients are limited to darkened rooms and full-time caregivers. I take omega-3s and vitamin D and don't eat (much) processed food. I have a good family doctor who understands the disease, family support and friends who keep me socializing. It's vital to feel validated.

And there are signs that the disease is finally being taken seriously. "This has been an exciting year," says Dr. Eleanor Stein, assistant clinical professor at the University of Calgary, whose practice is dedicated to ME. "Three influential U.S. government reports validate the existence and severity of ME/CFS, the need for better education for health care providers and the need for more research."

I did it. I got there. I swam for 10 minutes in the fast lane. It cost me a week in bed, but I'll do it again. I have a book to write. And another. Until I get into a clinical trial, until I can do it every day, I'll swim again, whenever I can.

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