9 Things you should know about ME/CFS

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome

Myalgic Encephalomyelitis (pronounced mai·al·juhk en·seh·fuh·low·mai·uh·lai·tuhs) and Chronic Fatigue Syndrome ME/CFS are terms to describe a disabling and complex illness. The Centers for Disease Control and Prevention (CDC), estimates that upwards of 2.5 million people suffer from it in the US alone.

Myalgic encephalomyelitis has for years, but surprisingly remains quite unknown. 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. The acronym ME/CFS is almost always used when discussing the condition.

What are the symptoms of ME/CFS?

People with ME/CFS lack the energy to do their usual activities. In severe cases it may confine them to bed.  The use of the word fatigue in it's name, can minimise what's it's like to live with ME/CFS. 

Some may think its just about being tired, but this is not the case.  It’s an overwhelming sense of fatigue after any activity, whether physical or mental, and the fatigue often won't improve after rest or sleep. This symptom is known as post-exertional malaise (PEM).

Other symptoms can include problems with sleep, concentration and cognition (brain fog), dizziness, as well as various intolerances to food, light, temperature changes, and noise.  ME/CFS changes people’s ability to do normal things.  Taking a shower or preparing a meal can feel impossible, particularly if this requires standing for long periods.

ME/CFS can be severe during the initial onset. Some are fortunate and recover but often not fully.  Most peoples'symptoms will come and go.  The frustrating thing about ME/CFS, is that patients often don't look ill, particularly during periods of remission.  But this may be because they withdraw from public when experiencing flares.

What does it Feel like?

Because Chronic Fatigue presents with a range of symptoms, peoples' experiences can vary.  My key symptoms are fatigue and muscle pain, spontaneous muscle spasms, skin rashes, raised lymph nodes, a sore throat, dizziness and brain fog.

My fatigue normally strikes a few hours after I have exercised. It can also happen if I’ve been working too long in my office without regular breaks.  The fatigue makes me feel heavy as though I'm walking through sludge. I often experience spontaneous bouts of yawning where it's hard to complete a sentence without interruption.  Fatigue is accompanied with muscle pain which feels like intense lactic acid build-up, as though I've run a long race.  When things get particularly bad, I also have raised lymph nodes,  a sore throat and a hive-like rash.

Interestingly the pain often recurs in the same areas of my body; typically down my right side. The muscle spasms trigger when I’m doing simple things, like standing at the kitchen bench, trying raise a cup of coffee to my mouth, or holding my phone to my head.  And the brain fog is frustrating when I forget peoples' names or how to spell simple words.

Is it real?

Although currently there's no simple laboratory test for ME/CFS, this isn't reason to suggest it doesn't exist.  Because we present with a range of symptoms that can affect many systems, it can be difficult to recognise.

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. 

Depending on where you live, doctors may not be across the latest research and 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 and can feel like a process to eliminate what it's not!
To diagnose Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, 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 (which will likely return normal results!)

They will also be interested in your energy levels, and changes that have occurred in terms of the tasks you can achieve.  They will want to know what 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 eliminate other conditions that can cause similar symptoms.

Can ME/CFS 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?

It’s thought that only 5% of people truly fully recover from ME/CFS to close to their pre-illness state. I’m one of the lucky ones who has achieved this, however I do continue to flare from time to time.  To minimise this, I pace my activity and rest whenever I have the opportunity to do so. I also take a few supplements that I find helpful.

How can Chronic Fatigue be cured?

Unfortunately, there is no current cure for ME/CFS however some find benefit treating various symptoms with lifestyle changes and supplements.   Until we have clinical trials to prove these things work, it's a guessing game.  I read patient observations in online forums and follow the latest research findings for insights.  As a consequence, I've removed gluten from my diet, I avoid alcohol and I add pure electrolytes to my water. I also use a mitochondrial support supplement during flares.  These things seem to reduce my symptoms, but I have no proof to confirm this.

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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.