CHRONIC FATIGUE SYNDROME – or Systemic Exertion Intolerance Disease ( SEID), Myalgic Encephalomyelitis (ME), Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome ( CFIDS) and others. These are just some of the terms used to describe this debilitating and life compromising condition. Those suffering would undoubtedly feel none of these terms do the actual symptoms justice – and rightfully so. There is a long history leading up to this largely debated and mysterious chronic illness and its name. News of illness that fit the description of chronic fatigue syndrome go back as far as 1750, when Sir Richard Manningham reported a syndrome called febricula, meaning “little fever.”
The term “chronic fatigue syndrome” was first used in medical literature to describe an illness that “seemed like chronic active Epstein-Barr virus (EBV) infection but did not seem to be caused by EBV.” In 1988, the term was defined in a publication: “Chronic fatigue syndrome: a working case definition,” and replaced the term “chronic Epstein-Barr virus syndrome”. This new definition was published after US Centers for Disease Control and Prevention researchers examined patients from another outbreak at Lake Tahoe, Nevada in the mid-1980s. What’s indisputable is that the disorder, regardless of what it is called, can often be misdiagnosed, misunderstood and devastating for its sufferers.
In Canada, according to a 2014 Canadian Community Health Survey, over 400 000 Canadians had a diagnosis of ME/CFS, ( and over half a million with CFS/Fibromyalgia) with 47.7% needing help with daily tasks according to their chronic health condition and 22.8% reporting that they are permanently unable to work. Symptoms are generally described – but not limited to:
• Loss of memory or concentration
• Sore throat
• Enlarged lymph nodes in your neck or armpits
• Unexplained muscle or joint pain
• Un -refreshing sleep
• Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Epidemic survivor from the Lake Tahoe outbreak, Erik Johnson, described the illness as follows:
“Marathon runners, overnight, could not climb a flight of stairs. People who set out in the morning for work had to be carried home. Those who could still drive got lost trying to find their way home. A math teacher could not do addition. An English teacher could not conjugate a sentence.
Throats looked like people had gargled with battery acid. We could hardly stand without leaning on something. Walking was more like lurching: aim for the door, and those with this illness only made it through fifty percent of the time. Those who closed their eyes dropped instantly. People suffered from malnutrition in the midst of a fully stocked kitchen because they couldn’t stand long enough or think well enough to prepare food.
Reading was out of the question. If you tried, you’d find that you were reading the same paragraph over and over again. TV caused seizures. Lights in the room burned our eyes. Music hurt our heads.
We were like soldiers coming out of a war zone. We lay comatose, but it wasn’t sleep. When we dragged ourselves back into consciousness, it was in groggy, toxic, “Twilight Zone” fashion.
I can still remember the sense of panic the first time I told my arm to reach for something and nothing happened. I remember saying things, and having everyone in the room tell me that I was speaking in tongues. I could have sworn that I was speaking perfect English. Other times, I told people to speak clearly, because it seemed they were speaking Greek.
This was not fatigue. It seemed to me more like a stroke victim who struggles, but cannot find the words to speak and cannot move.”
Individuals with CFS experience an abnormal immune response to energy output. High levels of oxidative stress post physical activity are exhibited. The condition is associated with abnormalities in the hypothalamic-pituitary-adrenal axis – a major part of the neuroendocrine system that controls reactions to stress and regulates many bodily processes including digestion, the immune system, mood and emotions and energy storage and expenditure. While specific symptoms vary across individual patients – the widely published lists of known symptoms most often do not begin to describe of those suffering with Chronic Fatigue Syndrome.
Recent research suggests that there is widespread inflammation in the brain. The over –activity and inflammation areas were found in the limbic system of the brain. Structures shown to be inflamed with this over-activity included areas of the hippocampus, amygdala, cingulate cortex, thalamus, mid brain and others. A study conducted in 2014 using advanced PET (positron emission tomography) scans was successfully able to conclude that “neuroinflammation is present in widespread brain areas in CFS/ME patients and was associated with the severity of neuropsychologic symptoms”.
At DNRS, we understand that correcting a maladapted stress response and limbic system function is imperative in the recovery process. Rewiring limbic system function can also regulate the inflammatory response that is involved with many chronic illnesses, not just CFS/ME. Thankfully, many have recovered from the horrendous suffering from various overlapping and misunderstood illnesses and are now living full and vibrant lives. To view some of our DNRS heroes, please see our success stories here – https://retrainingthebrain.com/success-stories
Addressing the injured brain is truly the key to recovery!
“You are not alone, your suffering has not been in vain, and you can live the life that you dreamed of ,even if you stopped dreaming a long time ago.” Annie Hopper – Wired for Healing