We’re all tired, it seems, but is it something else? Get to the gym. Eat healthily. Stop drinking coffee. Be efficient. Eat less; move more. This advice won’t work for those who have Chronic Fatigue Syndrome (ME-CFS). More than half a million Canadians suffer from this syndrome, perhaps someone you know? Even you?
On a business trip, I caught up with a friend who informed me she had not been to a gym in six months. She had been on sick leave with myalgic encephalomyelitis but more often called Chronic Fatigue Syndrome (CFS).
CFS is long-lasting and vexing fatigue with a cluster of symptoms: joint pain, headaches, sleep problems, and poor concentration and short-term memory, to name a few. It’s a disease that has baffled many.
There are no definitive diagnostic tests, and symptoms vary from patient to patient. The best diagnosis is inexplicable exhaustion that lasts for at least six months and isn’t alleviated by rest. CFS patients report unrefreshed sleep, unexplained pain in multiple body systems, cognitive impairments referred to as “brain fog,” and digestive ailments.
Half-a Million Canadians
Myalgic encephalomyelitis ― commonly known as chronic fatigue syndrome ― is a multi-system disease that affects approximately 580,000 Canadians of all ages, according to the Canadian Institutes of Health Research (CIHR). CFS affects more people than Parkinson’s disease, breast cancer or multiple sclerosis combined in Canada,
Laura Hillenbrand, the best-selling author of Seabiscuit and Unbroken, has lived with CFS for 29 years and spent many of those years bedbound. She describes it as a crash” or “post-exertional malaise” as an invisible line you know is there. Cross it, and it can be devastating. She writes,
“The exhaustion is so profound it’s a struggle to breathe, a struggle to lie there; it takes every effort just to stay alive,” Hillenbrand says. “This can go on for months or years. … You must be careful with every little energy. You don’t know what your line is.” Worse, if we are to believe recent federal reviews, my friend’s condition is all in her mind. Really?
These symptoms cause significant disability and distress, both psychological and physical. Many people report they are too tired to lift their arms to wash their hair in the shower or get out of bed in the morning.
Estimates between two in 1000 and two in 100 adults in the US are affected by CFS, and Statistics Canada in 2016 reports 408,000 and maybe more are affected by CFS.
It Hides in Us All
The late Nicholas Regush, my old basketball buddy, and fellow health journalist pioneered in the 1980s the investigation into understanding CFS, despite critics claiming it was “all in their hea.d.”. Regush’s book, The Virus Within – A Coming Epidemic: How Medical Detectives are Tracking a Terrifying Virus That Hides in Almost All of Us makes evident that what we don’t know might kill us. Regush followed what he described as a shadow virus, a little-known yet widely-distributed virus called Human Herpes Virus-6, or HHV-6 implicated in a varied group of conditions including chronic fatigue syndrome, multiple sclerosis, and AIDS.
CFS first entered the medical lexicon in 1988 to describe a cluster of symptoms without an apparent cause that doctors saw in the Lake Tahoe area of Nevada. The first sign was debilitating tiredness, but people also complained of sore throats, headaches, muscle pain and various other manifestations of general malaise. It was the lack of a clear biological cause, and the fact that many of the people diagnosed were young professionals opened the door to a smear campaign. The media quickly dub CFS the “yuppie f.”.
It’s Your Fault
People with the syndrome still say they are not taken seriously, blamed for their illness, or accused of malingering. But the symptoms cause significant disability and distress for people affected by CFS. There is no clear medical cause for CFS, so people who are affected often deal with the misunderstanding of their condition from family, friends and healthcare professionals.
CFS continues to be met with stigma both by the general public and the medical community. Research is providing legitimacy to CFS, shedding light on what’s happening inside the bodies of people with the condition. In a study published June 24, 2016, in the journal Microbiome, a team from Cornell University reports finding biological markers of the disease in gut bacteria and inflammatory microbial agents in the blood of 88 subjects.
The researchers were also able to correctly diagnose CFS in nearly 83 percent of subjects just by analyzing stool samples and blood work. Findings also show people with CFS may have abnormalities in their gut, much like patients with inflammatory conditions, including Crohn’s disease. These findings support earlier studies that states,
“…unequivocal” evidence shows that chronic fatigue syndrome is not an imaginary illness, but a genuine condition that causes the immune system to go into overdrive, leaving patients feeling perpetually exhausted.”
Further studies also support the idea that CFS acts like a “hit-and-run” event, with patients reporting getting sick with an infection and then never fully recovering. However, researchers warn we must be cautious because symptoms of CFS often overlap with other conditions, such as fibromyalgia and chronic headaches and researchers say further research is needed. So that’s a given. Research can be fickle and needs retesting.
Stigma Coming to an End
In September 2016, CTV news aired a story titled stigmatized chronic fatigue syndrome sufferers seek recognition indicating that “Canada’s largest scientific funding agency recently decided that CFS is not deserving of research funding. It’s not a legitimate disease, and more likely made up by patients, according to the Canadian Institute of Health Research. Dr Alison Bested, a Canadian specialist in the disorder, told CTV News a funding research proposal response demeans patients by telling them their illness is in their heads.
“We know for sure it is a physical illness that has a huge impact on the brain, the muscles, heart and the mitochondria,” she said in the CTV News interview. “The patients are in essence, in a resting state, they’re almost like in hibernation. Their bodies cannot produce the energy it needs,” Bested said. People living with CFS, and their families and caregivers, as of August 2019 can now look forward to a more promising future as a result of a $1.4M investment in a new national network that will create critically needed scientific knowledge about the causes of, and treatments for, myalgic encephalomyelitis.
