Myalgic Encephalomyelitis (pronounced mai·al·juhk en·seh·fuh·low·mai·uh·lai·tuhs) and Chronic Fatigue Syndrome are terms used to describe a disabling and complex illness. According to the Centers for Disease Control and Prevention (CDC), it is estimated that upwards of 2.5 million people suffer from it in the US alone.
Myalgic encephalomyelitis has been around for some time. It was first encountered in the 1930s although is thought to be much older. The name myalgic encephalomyelitis [was used] in an editorial in the Lancet, in 1956, when describing the 1955 Royal Free Hospital outbreak in London, UK. There was also an outbreak in Nevada in 1984 when the term Chronic Fatigue Syndrome was used.
Is myalgic encephalomyelitis the same as chronic fatigue syndrome?
Yes, the two terms are used to describe the same illness. Those of us who live with the condition will often use the acronym ME/CFS when we talk about Myalgic Encephalomyelitis, Chronic Fatigue Syndrome.
What are the symptoms of Chronic Fatigue Syndrome?
People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. It’s not just about being tired, it’s more than that. It’s an overwhelming sense of fatigue after activity, whether this is physical or mental and the fatigue doesn’t seem to improve after rest or sleep. This collection of symptoms that arise after activity is known as post-exertional malaise (PEM).
Other symptoms can include problems with sleep, thinking, and concentrating (brain fog), dizziness as well as various intolerances to food, light, temperature changes, and noise.
ME/CFS changes people’s ability to do daily normal things like taking a shower or preparing a meal, particularly if this requires standing still for periods.
The frustrating thing about ME/CFS is that you often don’t look ill. Often ME/CFS will affect people quite severely the first time they experience it. For those of us who recover somewhat, symptoms normally come and go. We call these crashes or flares.
What does Chronic Fatigue Feel like?
Because Chronic Fatigue presents with a range of symptoms, people will experience it differently. For me, fatigue and muscle pain are key symptoms along with spontaneous muscle spasms and skin rashes.
My muscle pain and fatigue, normally strike a few hours after I have exercised or if I’ve been working too long in my office. The pain feels like intense lactic acid build-up in my muscles and my joints feel stiff, sore, and inflamed, as though I’ve run a long race.
The pain will often recur in the same sites on my body including my neck, shoulders, and down my right side. The muscle spasms will trigger when I’m doing simple things, like standing at the kitchen bench.
Is Chronic Fatigue real?
Absolutely yes! Because we present with a range of symptoms that affect many systems, it can be difficult to recognise ME/CFS when we first visit our medical practitioner.
To help doctors assess ME/CFS, the US Department of Health and Human Services and several other government agencies commissioned the non-profit Institute of Medicine (IOM) to evaluate the literature and recommend the best diagnostic criteria for doctors, based on the evidence.
As a result of its findings, the IOM panel proposed renaming the condition "systemic exertion intolerance disease," or SEID and defined it as a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of those affected. In its final report, "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness," the panel concluded that CFS is, indeed, a "real" condition. ("Myalgic encephalomyelitis" means muscle pain or fatigue caused by inflammation in the brain and spinal cord.)
Depending on where you live, doctors may not be across the latest diagnostic tools but be assured ME/CFS is a recognised medical condition.
How is ME/CFS diagnosed?
It can take some time to get a diagnosis, given the broad range of symptoms. The pathway to diagnosis often feels like a process to eliminate what it’s not, first!
To diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), your doctor will probably:
- Ask about the medical history of you and your family
- Do a thorough physical and mental status examination
- Order blood, urine, or other tests
They will also be interested in your energy levels, and changes that have occurred in terms of the tasks you can achieve and what also happens when you push yourself mentally or physically.
Normally your sleep patterns will be discussed, along with your ability to think or handle decisions.
You may be referred to a specialist, like a neurologist, rheumatologist, or sleep specialist, to check for other conditions that can cause similar symptoms.
Can Chronic Fatigue Syndrome kill you?
According to Google, deaths from ME/CFS are very rare, and ME/CFS is rarely recorded on death certificates. In England and Wales, between 2001 and 2016, 88 death certificates stated that the death was either partly or fully caused by myalgic encephalomyelitis/chronic fatigue syndrome, which is less than six deaths per year.
How long does it take to recover from Chronic Fatigue?
It’s thought that only about 5% of people truly fully recover from ME/CFS people can recover to close to their pre-illness level. I’m one of the lucky ones who has achieved this, however, I continue to have several crashes each year. To minimise the number and severity of this, I find it important to pace my activity and rest whenever I have the opportunity to do so. I also take a few supplements that I find beneficial.
How can Chronic Fatigue be cured?
Unfortunately, there is no known cure for ME/CFS however some of us find benefit in treating some symptoms with lifestyle changes and supplements. I have removed gluten from my diet, I hardly ever drink any alcohol and I add pure electrolytes to my water. I also take a mitochondrial support supplement.
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Disclaimer: This article is for informational purposes only and to share my personal experience of ME/CFS. The information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Photo by Надя Кисільова on Unsplash