Compassion in Action: Contact Us

As printed in the Health section, October 2002

Making a Difference for People living with Fibromyalgia and Chronic Fatigue Syndrome.

"Imagine...

Emily Dore was only 13 when her energy began to fade and pain took over her body. No one knew what the problem was - stress, attention seeking, a way to avoid responsibility? What if it was all in her head? Was she crazy? These fears plague many sufferers who have not been diagnosed correctly and have created a stigma that exacerbates an already devastating experience. It took Emily a year to be diagnosed. "The first pediatrician thought I was coping with Epstein Barr Syndrome and told me to be grateful I was doing so well. 90% of the doctors I saw cared very much and they believed in me but they just couldn't tell me what was going on".

David Mann was an accomplished, middle-aged Vice President of technology at Nortel Networks when his body started to feel crippled with pain and complete exhaustion. Even with the credibility of his position and his access to the best doctors, no one could tell him why he was ill or what he could do about it. Once diagnosed David was able to gather his internal and external resources to find ways to cope with and improve his condition.

Shirley, a successful businesswoman in Ottawa was overwhelmed by the changes in her body and in her ability to meet the demands in her life. Once she was diagnosed with Fibromyalgia, Shirley was mobilized to research the condition and find ways to cope, including: a serious regime of exercise, yoga, vitamin supplementation and ways to deal with pain management and sleep problems. "One always has to find a positive way to deal with the negative."

In fact over 100,000 Canadians are afflicted with Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) making it twice as common as Multiple Sclerosis and approximately 1 million Canadians with Fibromylagia - almost as common as Diabetes.20

People of all age, gender and socioeconomic groups are affected and experience symptoms such as extreme joint, muscle pain and headache, profound exhaustion not reversed by rest, occasional memory and difficulty in concentrating, sleep disturbances and insomnia, recurrent flu-like symptoms and depression. Researchers have noted a significant overlap between the two syndromes. There is no known cause.

The stories are endless. Thousands of people like Emily, David and Shirley in the Ottawa Region alone, whose lives have been taken over by an illness that many doctors dismiss or misdiagnose are struggling to find a way to make sense out of what is happening to them so they can do something about it. It is common to have to consult 20-30 physicians over the course of years before the correct diagnosis is made. 20

Compassion In Action has been founded to raise money to support research into these health disorders and to help sufferers to be diagnosed and treated early in the disease process. It is essential that help be found to minimize the personal devastation as well as the costs to the public and private sectors.

Epidemiological information is not complete due to problems in gaining accurate diagnoses and reporting. Studies are revealing growing costs to society such as costs of pre-diagnostic medical services, diagnostic testing and ongoing health care which are estimated at more than $300 million a year in Canada. A recent study found that sufferers visited health care providers on an average of 40 times per year. Disability awards cost insurance companies in Canada over $450 million in a 1994 study. The most conservative estimate indicates a huge expense: 1.3 billion per year in public costs and 1.6 billion per year in private costs.

Personal costs, aside from the psychic pain endured by the afflicted when there lives change includes: uninsured drug costs, uninsured therapy costs, physiotherapy, massage therapy, chiropractic services, Acupuncture, psychological and psychiatric services, counselling, diminished ability to earn or save for retirement, loss of wealth, and loss of dignity. It is vital that the diagnosis be made early to ensure the effects of a holistic program of rehabilitation can be maximized. 20

There is hope. You can help. There may be someone you know who has the symptoms you have learned about in this article whom you can now direct them to Compassion in Action where they will be helped to find the resources they need. It is imperative that people receive medical interventions early.

You can help. There is a fundraising event in October that you can attend or contribute to. It is the Ottawa Gala Ball on October 19th at the Congress Centre. The tickets are $125.00 per person (receipts for tax deductions are available for a portion of the ticket) available from the Compassion In Action office at 565-2423 or by email at office@compassioninaction.ca. Miss Canada will join us in a gown designed by Richard Robinson. There will be silent and live auctions, and dancing hosted by the Arthur Murray Dance Studios - including dance performances and instruction.

You can help. Volunteer to be a member of the Compassion in Action team. You can make a difference to people like Emily, David and Shirley or perhaps someone you know and love. Visit our website at www.compassioninaction.ca for information.