Understanding myalgic encephalomyelitis/chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is a debilitating medical condition characterized by extreme fatigue that is not alleviated by bed rest, and which can worsen with physical or mental activity.

Symptoms of CFS can include exhaustion, weakness, muscle or joint pain, insomnia, unrefreshed sleep, tiredness or discomfort lasting more than 24 hours caused by physical activity, problems with the functioning of the brain (e.g., confusion or short-term memory loss), and problems with the immune system (e.recurrent flu-like symptoms, easily catching viral infections with long recovery periods), among others. Chronic fatigue can last for years.

We usually connect the word "fatigue" with everyday tiredness, such as we may get from a gruelling work week, finishing a triathlon, or getting through a stressful occasion. These may suggest that the fatigue is short-term and will be remedied by some good rest and sleep.

But how does one adequately put into words the level of tiredness where a person with CFS experiences ongoing physical incapacity for roughly 50% of the time? Some people with CFS even wind up housebound or bedridden, feeling more incapacitated than those undergoing chemotherapy or those with HIV/AIDS (excluding those at the terminal stage).

Clearly this isn't the type of problem that can be remedied just by putting your feet up for the evening, or securing a night or three of good sleep. The problem is that using the word "fatigue" doesn't fully express the possible range of exhaustion that a person with CFS faces or the severity of the condition.


A name less recognized in Canada but moving into more common use is myalgic encephalomyelitis (ME). This lengthy name can be easily broken down into its parts, where "myalgic" refers to muscle pain; "encephalo" refers to the brain; "myel" refers to the spinal cord; and "itis" refers to inflammation.

In 2001, Health Canada appointed an international panel of experts in this emerging field of medicine to establish a clinical working-case definition, diagnostic guidelines, and treatment procedures. The panel released a set of guidelines in 2003 and their choice of name to describe the condition was both "myalgic encephalomyelitis" and "chronic fatigue syndrome" – with acronyms shortening it down to a manageable size: ME/CFS.

How common is this condition? It is estimated that more than 1 million people in the US population have ME/CFS – 422 per every 100,000 people. It is 4 times as common in women as in men (522 out of 100,000 women have it), and women suffer from ME/CFS in greater numbers than from breast cancer (26 per 100,000), HIV/AIDS (12 per 100,000), or lung cancer (33 per 100,000).

Some areas may have higher numbers. In 2007, a US study found the occurrence of ME/CFS to be as high as 2.5% of the population in Georgia.

Here in Canada, Statistics Canada reported in 2005 that over 341,000 Canadians were diagnosed with ME/CFS. While the growing numbers have lead to increased public awareness, the hunt is still on for definitive causes, prevention, and a cure.

Coping with chronic fatigue syndrome

In this day and age, you may feel incredulous to find yourself in a medical "wilderness" where little is known about your condition and the way out is unmapped. But for those with chronic fatigue syndrome (CFS), it is a reality.

If you have been diagnosed with CFS, although you may initially feel at a loss or even abandoned, the truth is you are not alone. Take heart! Those who started the journey before you have helped their doctors and themselves chart effective coping strategies. It's true that coping mechanisms are not a cure; nevertheless, they can make a huge difference to the quality of life you rally for yourself and they can help you safeguard the relationships you cherish.

Living with CFS can be a challenging journey through the wilderness. To effectively steer yourself, keep these "survival" tips in mind:

  • Adjust your bearings. Take a good long look at your new situation and realistically modify your expectations of yourself. This is not as easy as it sounds. It may take time and some hard psychological work. Your best recovery may involve letting go of previous goals and standards and accepting your new, albeit unasked-for, set of limitations. You may also need to adjust areas such as your diet, sleep habits, exercise patterns, and work hours.
  • Look for the right help. Find a doctor who understands your condition and can guide you through the lifestyle changes you may have to make in order to optimize your energy. If you're having trouble finding a knowledgeable doctor, search online support groups and disease associations – they may be able to suggest someone in your area. Professional counselling may also provide you and your family with the tools and support to address and successfully manage the stress, grief, and changing circumstances of living with a chronic illness.
  • Pace yourself. Beware the "push-crash" cycle familiar to those with CFS; that is, pushing the limits and then "crashing" for a day or more afterwards as a result. Whether it's with gentle, graded exercise or day-to-day activities, keep the bigger journey in mind and set an ongoing goal not to wind up in a "crash" situation. If you know a particular activity causes you to "crash" (e.g., grocery shopping), try to break it up over a few days. Rest and conserve energy (through sleep or meditation) before and after activities, and remember that energy can drain off through not only physical and mental activity but emotional highs and lows as well.
  • Send up smoke signals. Communicate! It may be difficult for family and friends to understand, imagine, or anticipate what you are going through. Don't ask them to be mind-readers. Educate yourself so that you can educate them.
  • Travel lean and mean. If, despite your best effort, friends or family remain unsupportive or take more energy than you can spare, you may have to consider keeping a distance from them for a while. You don't have the energy at this point to carry the extra load. Find people who are supportive and understanding of what you're going through, such as CFS support groups.
  • Track yourself. Take care of you. Tune in closely to your body's needs and rest accordingly. Depression may result from the myriad of losses and changes you face; talk to your doctor if you start to see signs of depression. Employ stress-management tools along the way, and learn some new ones. Support groups, cognitive behavioural therapy, self-help techniques, prayer, meditation, and yoga can all help lighten your load. And keeping your sense of humour is always a good idea!
  • Adjust your exercise. You should adjust your exercise based on the state of your condition. During a crash or a flare, stick to day-to-day activities. Once stabilized, you can start with short low-impact exercises like stretching or conditioning. Exercise and rest periods should follow a 1:3 ratio. For example, one minute of exercise should be followed by 3 minutes of rest. Remember to start low and go slow. Sessions can be spread throughout the day to minimize the possibility of flares, and the duration of exercise can be increased with tolerance. Talk to your doctor or physiotherapist to discuss what exercises are suitable for you.

ME/CFS: dealing with an "invisible" condition

Chronic fatigue syndrome (CFS) is one of these "invisible" conditions that can't be seen on the outside. There are no external signs to announce to the world that you feel ill or in pain; no drops of blood, no casts on your arm, and no neon signs around your neck. This can offer solace in many ways. It provides for privacy and the ability to hide your illness if you so wish (to the extent possible).

At the same time, however, it means that the world may be oblivious to, and at times even skeptical of, the difficulties you face. How can they appreciate what is wrong when outwardly you look just fine? Why would someone give up their seat for you on the bus when you appear healthy and fit, perhaps even young? How can family and friends easily "get" the problem when you look the same as you always have?

The words "You look great!" can be bittersweet for someone living with an invisible illness. While compliments are of course welcome and boost the self-esteem (as they do for anyone!), you can sense the underlying doubt in their mind: "So are you really sick?" It can be frustrating and even a strain to explain or reiterate that you are not as well as you look, especially when it is perfectly obvious to you how rotten you feel.

CFS is a condition that has faced skepticism from the medical community in the past, where health professionals and insurance companies have commented that people with CFS "are not really sick because they look fine." This makes it especially difficult for people with CFS to regulate their emotions because they are getting conflicting responses of both friendly compliments and professional disbelief.

If someone you know is coping with an invisible illness, do your best to keep the lines of communication open and the support flowing. Try to place yourself in their shoes and imagine what you might feel in their situation. Open your imagination and provide a supportive environment. And if you need an extra reason to go the extra mile, think of it as building good karma. After all, you never know when you'll need others' support yourself!

Myalgic encephalomyelitis/chronic fatigue syndrome: Mia's story

Ten years ago, Mia* was a happy, outgoing, and busy person. At 28, she was holding down a full-time job, working out at the gym three days a week, and busy with friends and family. Summers included canoe trips, cottage weekends, and vacations that were physically active, such as hiking in the Grand Canyon and camping in Iceland.

In June of the year she was 28, Mia developed mononucleosis. With that, everything changed. During the initial bout of the illness, Mia was extremely weak and unable to care for herself – even putting on shoes was a major physical effort. Gradually over a couple of months, her energy improved to about 50% or 60% of where it had been, and it has remained there ever since.

When Mia didn't recuperate as her doctor expected, she underwent a series of blood tests to try and identify the source of her constant fatigue. None of the tests yielded a positive diagnosis, which was a double-edged sword of both relief and frustration. It meant no cancer, no hypothyroidism, and no anemia – hooray! But what was wrong?

After six months, Mia's family doctor diagnosed her with chronic fatigue syndrome (CFS). As even less was known about the illness a decade ago, there was little her doctor could do. Mia was off work for years and struggled to make the psychological, physical, and social adjustments needed to cope with having a chronic illness. She recalls one specialist who told her that CFS was not a "real" diagnosis, and another who told her that her decreased stamina was a fact of life because "everyone gets older and has less energy." "True," Mia acknowledges, "but how many 28-year-olds need 19 hours of bed rest a day?"

Fortunately for Mia, she had family and friends who were supportive and they helped her find her way. Like anyone who faces chronic illness, Mia had to learn to let go of many ways of thinking and doing things. She found psychotherapy to be a source of strength, giving her the tools and the reinforcement to learn new coping skills.

While her energy levels have remained at about half of those of her healthy peers, on the inside Mia remains the same active person as she was before. The same interests endure, although she has to pursue them in a different way. For example, while Mia cannot meet the physical demands of a canoe trip, she can enjoy the outdoors with a trip to the cottage, so long as she has appropriate and well-planned supports in place. These supports include energy conservation strategies such as pacing, long periods of daytime rest with long hours of nighttime sleep, and help from family members with the driving and the cooking.

Today, Mia and others with CFS receive much more acceptance from the medical community than they did ten years ago. In 2001, Health Canada established a panel of international experts in the field of CFS to establish a clinical case definition of the illness as well as diagnostic and treatment protocols. Their guidelines were published in 2003. In 2004, OHIP (Ontario Health Insurance Plan) assigned CFS a diagnostic code, making it official by adding it to the books.

At present, researchers are studying many aspects of the illness, including the causes, pathophysiology (i.e., how the body's functions are changed by the disease), and treatments. While Mia knows that the best strategy for her right now is to keep on going, she also believes she and her family have good reason to hope that the coming decade will bring new and exciting insight into the nature of CFS.

*Mia's story is based on a true account. She has requested anonymity so her name has been changed.