Help for those with chronic diseases

A $2-million provincial clinical and research study will help patients with a variety of complex chronic diseases, such as chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome, with screening, diagnosis and treatment.

  • Apr. 1, 2011 11:00 a.m.

A $2-million provincial clinical and research study will help patients with a variety of complex chronic diseases, such as chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome, with screening, diagnosis and treatment.

There is a variety of debilitating complex chronic diseases where the cause is unknown, but where it is strongly suspected that an infectious agent may play a role. These diseases can be very difficult to diagnose and treat. They often cause patients to experience extreme fatigue and pain, trouble sleeping and stiffness.

However, over the last few years, there have been many advances in genome science, including DNA sequencing and computer analysis. These advances have led to new techniques that may help to diagnose previously difficult illnesses, such as these.

As a result, in September 2010 the Ministry of Health Services asked the Provincial Health Services Authority (PHSA) to present options for a clinic for patients with complex symptoms, possibly related to an underlying infectious disease.

With this clinic and study, B.C. will work with patients and family physicians from across the province to provide care to patients and learn more about these complex diseases.

The clinic will take referrals from family physicians or other health-care providers for patients with symptoms of these chronic illnesses.

The goal is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management.

The clinic will also include telehealth capabilities, to provide consultations and information to physicians and health-care providers from all across the province.

To coincide with the clinic, the province’s research study will collaborate with the clinic to examine these illnesses in depth.

The province is working with PHSA to develop a detailed business case for the clinic and research study, which should be up and running by fall 2011.

“Chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome can seriously affect people’s quality of life and cause immense pain and suffering,” says Minister of Health Michael de Jong. “By taking a leading role, I hope that B.C. can help to positively impact patients across the country by studying these illnesses and learning ways to help patients manage their symptoms.”

Provincial Health Officer Dr. Perry Kendall says he’s pleased the project is moving forward and hopes investigations done in B.C. will uncover the causes of illnesses, lead to improved diagnostics and offer new tools for physicians and patients.

“By taking an in depth look at these diseases, we will be better able to help our patients,” Kendall says.

PHSA president and CEO Lynda Cranston says the clinic will work with physicians from across the province to help them understand the clinical signs of these chronic diseases, to provide testing assistance when needed, and to provide help and guidance with treatment.

“We are hopeful this clinic will lead us to better understand the causes of these complex chronic illnesses,”  Cranston says.

Quick facts:

• Lyme disease is a tick-transmitted infection caused by Borrelia burgdorferi.

• Diagnosis of Lyme disease can be made by physicians based on clinical signs and symptoms and can be supported by lab tests by PHSA laboratories.

• Less than one per cent of ticks in B.C. that can carry Lyme are infected with the Lyme-causing bacteria.

• Early symptoms of Lyme may include a “bulls-eye” rash which spreads outward on the skin as well as fever, headache, and muscle and joint pain.

• BCCDC uses two-tier testing for Lyme disease as recommended by the Canadian Public Health Laboratory Network, the Centre for Disease Control USA, the Association of Public Health Laboratories, the Infectious Diseases Society of America and other major health-care organizations throughout the world.

• Acute Lyme disease is treatable with a course of antibiotics, which usually prevents development of what is referred to as chronic Lyme disease. However some people even after treatment develop chronic, debilitating symptoms, which can be more difficult to treat. This new clinic will help the medical world understand this chronic complex illness and may uncover unknown causes for this type of illness.

• The Canadian Community Health Survey found that there are 38,000 British Columbians who report being diagnosed with chronic fatigue syndrome.

• Among Canadians with 23 chronic conditions, those who reported chronic fatigue syndrome consistently ranked as having more unmet medical and home-care need, less food security, more marginalization, more need of help with tasks, greater difficulty in social situations, less ability to work and lower personal income.

• Patients who suffer from fibromyalgia often experience diffuse chronic pain, accompanied by other symptoms such as poor sleep, fatigue and stiffness.