By Richard Tardif
Recently, on a business trip I caught up with a friend who informed me she had been on sick leave with myalgic encephalomyelitis, but more often called Chronic Fatigue Syndrome (CFS), a long-lasting fatigue with a cluster of symptoms: joint pain, headaches, sleeps problems, and poor concentration and short-term memory, to name a few. If we are to believe a recent federal review, 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 USA are affected by CFS, and Statistics Canada reports 408,000 of us are affected by CFS.
The late Nicholas Regush, my old basketball buddy, and fellow health and science journalist, pioneered in the 1980s the investigation into Human Herpes Virus 6 (HHV-6), and with that came his relentless insistence that HHV-6 was a mysterious new epidemic that has already done serious damage to public health, in particular when it came to understanding CFS, despite critics claiming it was “all in their heads”.
How can HHV-6, a common virus that purportedly goes to sleep harmlessly in the body after initial infection in almost everyone, awaken to trigger or contribute to serious illness or even death? Regush asked the question why is HHV-6 the key to understanding chronic fatigue syndrome? Why does it attack nerves, resulting in a variety of brain and nervous system diseases, including multiple sclerosis? It’s still a question today and there is still no single diagnostic test, or known cause.
People diagnosed with CFS often have long-lasting fatigue with a cluster of symptoms: joint pain, headaches, sleeps problems, and poor concentration and short-term memory, to name a few. These 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 misunderstanding of their condition from family, friends and healthcare professionals. CFS is often met with stigma both by the general public and the medical community.
New research is providing legitimacy to 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 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.
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 to be tested, and even retested.
In the meantime, the stigmatization battle continues and there does not seem to be a light at the end of the tunnel, in Canada, anyway!
In September 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 because it is not a legitimate disease, and more likely made up by patients”.
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. In March, the Canadian Institute of Health Research (CIHR) asked scientists to submit proposals for up to $600,000 in funding to study CFS and to create a research network, establish standards of care for CFS patients, and educate Doctors and other clinicians.
But their proposal was rejected. The reason? The reviewers felt “there is no evidence that Chronic Fatigue Syndrome is a disease.” It also said there was evidence that “psychosocial factors” are “both a cause and perpetuating factor for CFS.”
Bested disagreed.
“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.
