Vancouver woman with chronic fatigue syndrome struggles to find care

A Vancouver woman is detailing her struggles to find a doctor who specializes in a chronic condition she has.

Jessica Routliffe was diagnosed with Myalgic encephalomyelitis — also known as chronic fatigue syndrome — earlier this year. She says her search for a general practitioner who is familiar with what she’s dealing with has yielded no results.

It’s a process she describes as discouraging, noting the lack of responses from those she’s contacted.

“I don’t know if any of my messages are even getting through, like literally zero response from any of these clinics … I don’t know, it’s frustrating, it’s tiring, most days I don’t have the mental energy to find clinics,” Routliffe said in an interview with CityNews.

‘I could sleep for 12 hours and barely feel rested’

While Routliffe is now in line to see a specialist at BC Women’s Hospital, she says she’ll have to wait two or more years based on her position on the wait list.

She says no matter how much sleep she gets, she’s never fully rested.

“I could sleep for 12 hours and barely feel rested when you wake up, and I didn’t really realize how much that would affect someone until it kind of started being my life,” she explained.

“Mentally, it’s hard to focus … I’ll be standing, and unless it’s a busy day at work and I can really just keep on task, there are some days where my body just feels heavy, like I just can’t think, I think I’m just staring off into the distance.”

Routliffe says it’s difficult to explain the symptoms of her condition, noting she faced many challenges with her own family doctor, who knew little about Myalgic encephalomyelitis.

As part of a project by the ME/FM Society of BC, a 2020 survey found 53 per cent of doctors in the province reported interacting with a patient who had chronic fatigue syndrome, yet 80.4 per cent felt they had moderate to no knowledge of the medical condition.

It also found that 43.9 per cent of doctors thought they had no confidence in diagnosing chronic fatigue syndrome, and 52.6 per cent felt they couldn’t treat individuals with the medical condition.

The ME/FM Society of BC’ s strategic initiatives director, Lana LeBlanc, points to international studies saying that over three-quarters of those affected with chronic fatigue syndrome are unable to work, a quarter are unable to leave their homes, and are confined to their bed for part of the day. She says the medical condition adversely affects those who have it.

“People living with [chronic fatigue syndrome] are very sick; it impacts their livelihood, their identity, it impacts the family and the household as well because of the illness,” she explained.

Stigma around Myalgic encephalomyelitis

The lack of knowledge around chronic fatigue syndrome has been due to widespread stigma, according to the society’s co-chair, Hilary Robertson.

“At one point, it was regarded as the yuppie flu, and it’s been exceptionally difficult for these patients to self-advocate,” she said in an interview with CityNews. “There’s a great deal of dismissal and stigma; this is not a fun and sexy disease.”

While more is learned about the disease, Robertson says the stigma around it remains.

The 2015 Canadian Community Health Survey found more than 77,000 British Columbians had chronic fatigue syndrome. Robertson says that number has increased to 150,000, with long-COVID symptoms often overlapping with those of chronic fatigue syndrome.

Recommendations given by doctors in the survey to better treat the medical condition include more education for doctors, guidelines for diagnosis, and providing referral resources.

LeBlanc says the ME/FS Society is looking for support from the provincial government to educate medical professionals on chronic fatigue syndrome better.

“We’re looking for education across the province to support the early diagnosis of [chronic fatigue syndrome] in order for patients to have their condition identified, for them to begin the appropriate treatment and support, and to start reducing that harm and stigma that’s existed so far,” she said.