Can we talk about complex chronic diseases?

January 28 2019
There’s three of them. And 79% of people affected are women. So why do we still know so little?

Complex Chronic Diseases are, simply put: illnesses that do not get better.

There are three: Fibromyalgia, Chronic Lyme Disease and Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome.

They are thought to exist in 3% of the population, and 79% of people living with a complex chronic disease are women. When you do the math, that’s 15,000 women in Vancouver alone. Thousands of women are experiencing health concerns we know very little about.

Quick definitions:

  • Fibromyalgia is characterized by widespread pain, fatigue, sleep, memory and mood issues. It affects women 6 to 9 times more often than men.

  • Chronic Lyme Disease affects some patients who have had Lyme disease. Symptoms including fatigue, pain, brain fog, and sleep disturbance.

  • The most common symptom of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) is disabling fatigue, and flu-like symptoms that becomes much worse after even a small amount of physical exertion. Of those affected, up to 85% of them are women and up to 90% of them are undiagnosed.

A diagnosis with no tests.

It’s common for people with complex chronic diseases to get dismissed by doctors. Take symptoms like constant pain or fatigue -- they’re not visible the same way acute pain is.

In fact, there are actually no blood or lab tests to confirm a diagnosis of any of the three. Instead they’re identified according to a group of symptoms. This first requires excluding a number of other possibilities. It can take years.

Plus, not only do symptoms worsen over time, but there’s increased likelihood of experiencing associated stress, anxiety and depression. Mental health concerns can, of course, compound the disease itself.

The impact is staggering.

Most complex chronic diseases occur when people are of working age. With Chronic Fatigue, a quarter of patients are housebound… three quarters are unable to work.

Some women have doctors who understand their history, and their family history. Some women have the ability to do their own research, and advocate for their needs within the healthcare system. But way too often, women suffer in silence.

What’s taking so long?

This can all be chalked up to a long-standing gender bias surrounding women’s healthcare, and women’s health research. There’s no consensus on the underlying causes, the markers of one condition versus another, how they progress over time, and optimal treatments.

Care is ultimately left up to trial and error, in the best situations.

Power in evidence. And strength in numbers.

The Women’s Health Research Institute at BC Women’s has developed a registry. They ask patients of BC Women’s Complex Chronic Disease program to give consent to use their medical records for future research.

As it continues to get populated, it will become a gold mine of data. Researchers will finally be able to ask the right questions that have remained unanswered for too long.

Watch Genesa Greening on CTV, speaking about how complex chronic diseases are ultimately a women’s health issue.

Support projects like the Complex Chronic Disease data registry + more, by contributing to the Women’s Health Research Institute.

Thumbnail illustration by @recipiesforselflove