The star article, by Lauren Pelley, 4 July 2016: New research unlocking mysteries behind chronic fatigue syndrome,
Study showing biological markers of long-misunderstood condition “one more piece of the puzzle,” researchers say.
’80 per cent of patients still go undiagnosed’
Scott Simpson remembers the exact day his whole world changed.
It was August 9, 2012, and the then 47-year-old medal-winning triathlete woke up with a feeling unlike anything he’d experienced before. It was a deep, inexplicable fatigue and sickness affecting every part of his body, including his thinking and speaking abilities.
The next day, and the day after, Simpson recalls feeling a bit better – enough to compete in another triathlon. But that put him into a much deeper hole.
It felt like the typical exhaustion of competing in a triathlon, coupled with the crippling feelings of influenza and a bad hangover, the west-end Toronto resident says. And it didn’t go away. Simpson had been through a medical crisis before after finding out he was HIV positive more than a decade prior, but this bout of illness was a total mystery, with no link to his HIV status, according to his doctors.
After six weeks of strange symptoms – and no formal diagnosis – Simpson began his own online research.
One condition jumped out: Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), a complex condition characterized by a cluster of symptoms that often overlap with other illnesses. The range of debilitating issues includes pain, unrefreshing sleep, and fatigue that grows worse after exertion, according to medical literature.
“I hit so many of them, especially the cardinal symptom, the post-exertional malaise,” Simpson says, adding he still hasn’t received a formal diagnosis for the frustrating condition that’s left him, four years later, with constant lingering symptoms of pain and fatigue.
ME/CFS has long been a controversial and misunderstood illness, and one that’s often met with stigma both by the general public and the medical community, with no widely-accepted treatment, single diagnostic test, or known cause.
It may affect around 408,000 Canadians, according to self-reported data from Statistics Canada’s 2014 Canadian Community Health Survey, and experts say a large percentage of sufferers aren’t properly diagnosed.
But new research is providing legitimacy to ME/CFS, while shedding light on what’s actually happening inside the bodies of people with the condition.
In a study published June 23 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.
The researchers were also able to correctly diagnose ME/CFS in nearly 83 per cent of subjects just by analyzing stool samples and blood work.
Researcher Maureen Hanson, a professor in Cornell’s department of molecular biology and genetics, says the findings show people with ME/CFS have abnormalities in their gut, much like patients with inflammatory conditions including Crohn’s disease.
The study involved 88 participants – a mix of control subjects and patients with ME/CFS, who were identified by a specialist in New York.
Dr. Harvey Moldofsky, a professor emeritus in the University of Toronto’s department of psychiatry, who spent more than four decades studying the causes and treatments of the illnesses now known as fibromyalgia and ME/CFS and was not involved in the research, says the study has several methodological concerns.
“(The researchers) acknowledge that they really need to study a larger population. OK, fair enough. But there is the question as to who the other people are that they’re going to study,” he says. “What do you mean by normal? How do these people differ in their diet? How do these people differ in terms of their exercise?”
Since the symptoms of ME/CFS often overlap with other conditions, such as fibromyalgia and chronic headaches, Moldofsky says further research also needs to explore these other patient populations sharing similar symptoms.
Still, he says, “this is a beginning,” and it’s one Hanson and her team hopes to build on. Other researchers are conducting similar studies, she says, which could replicate the Cornell results down the road, and her own team plans to keep exploring what’s happening in the gut microbiome of people with ME/CFS.
“There’s lots of biological evidence now indicating this is a biological disease,” she adds. “Our information is one more piece of the puzzle.”
In 2014, a study from Stanford University found abnormalities in the white matter of patients with ME/CFS, while research published the following year by Columbia University researchers showed distinct differences in the immune systems of people with the disease, compared to healthy controls.
Piece by piece, this growing body of research is providing more evidence that ME/CFS is “absolutely a real, physiological illness,” says Dr. Alison Bested, a hematological pathologist who has spent 25 years helping patients with the disease.
“But the whole area of ME/CFS is not being taught in the medical curriculum or the post-grad curriculum,” she adds. “The average doctor in our community is not knowledgeable about ME/CFS, and there’s still a lot of stigmatism – that it’s a belief system, that it’s all in your head.”
Around 80 per cent of patients still go undiagnosed, she says. “It’s shocking to me.”
Simpson, now 50, feels betrayed by the medical system. He said when he was diagnosed with HIV at 33 years of age the treatment he received from physicians was “nothing but positive.” (He is currently on antiretroviral medications and physicians still haven’t linked his ongoing pain and fatigue symptoms to having HIV, he says.)
In contrast, his search for answers to his potential ME/CFS symptoms led to nothing but stigma, such as one internal medicine doctor telling him it was just a “mood disorder.” He’s now advocating for people with the condition as part of a grassroots group called Millions Missing for ME Canada, focused on pushing for more research funding.
“This is basically a crisis situation,” Simpson says. “We are health-care system victims.”
Still, Bested says the medical community has made “tremendous strides” at the research level, which now needs to translate into clinical tools to help patients – including those, like Simpson, who’ve been told the debilitating condition is just make-believe.
“We know it’s a physiological illness,” Bested says.