It’s time to get real about this commonly misunderstood condition
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating condition that can affect the nervous and immune systems and, according to the ME Association, affects at least 250,000 people in the UK. Characteristics associated with this illness include severe and ongoing fatigue that doesn’t ease with rest, brain fog, headaches, and sleep problems.
As someone who has been living with chronic fatigue syndrome for many years now, I’m familiar with the harsh realities of navigating life while trying to manage my symptoms. I was first diagnosed with chronic fatigue syndrome and other health issues during a traumatic time in my life, in which I lost my father to cancer and suffered a stillbirth within a very short space of time.
A systematic review, published in Psychosomatic Medicine, has suggested a possible link between trauma or stress and functional somatic conditions such as CFS, but every person’s journey is unique and no two cases are exactly the same. With that in mind, there are also many myths and misconceptions associated with chronic fatigue syndrome, so, let’s debunk some of them now, together.
Myth one: People with chronic fatigue syndrome are ‘just tired’
Chronic fatigue syndrome is far more complex than just ‘feeling tired’ in the normal sense of the word. People with CFS feel regularly and profoundly fatigued. This fatigue never seems to improve, even with rest.
Life with CFS, for most people, means a constant struggle to sleep and we rarely wake feeling truly refreshed, even after many long hours of slumber. In my personal experience, I have found that I often feel completely exhausted by 4pm, yet when I try to get an early night, sleep doesn’t come easily, and I can spend hours tossing and turning before eventually drifting off. Many of those with CFS (myself included) also have vivid dreams and may struggle to lie in, waking early and being unable to get back to sleep. This type of ongoing and prolonged fatigue is very different from a general feeling of tiredness, and can severely impact daily life.
Myth two: Fatigue is the only symptom
Life with chronic fatigue is more complex than some may realise. Although fatigue is, of course, one of the main symptoms of CFS, many other issues go hand in hand with this illness. These include:
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Problems with concentration and memory. People with chronic fatigue syndrome may have difficulty concentrating or remembering details. Some people describe a feeling of ‘brain fog’.
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Problems sleeping. Falling asleep can prove difficult. There may also be issues with restless sleep and vivid dreams.
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Painful muscles and joints. Painful muscles, joint pain, and spasms can all be experienced by those with CFS.
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Sensitivity to taste, light, sound, touch, and smell. Adapting to new surroundings can be difficult for some. Certain lighting and noise levels can be overwhelming.
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Issues with temperature. Hot flushes or cold chills can seemingly occur out of nowhere, leaving us feeling flustered and uneasy.
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Heart palpitations. Fast and irregular heartbeats can often be one of the CFS symptoms.
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Flu-like symptoms. Many people also experience flu-like symptoms and dizziness.
Myth three: CFS can be diagnosed with a simple test
A common myth is that your GP will be able to diagnose chronic fatigue syndrome with a blood test, or by using specific markers. In reality, CFS is diagnosed using a detailed evaluation of the patient’s medical history and symptoms. Guidelines from the National Institute for Health and Care Excellence (NICE) say doctors should consider diagnosing ME/CFS if all the following apply, and are not caused by another condition: fatigue (extreme tiredness); sleep problems; issues with thinking and concentration; and symptoms that are made worse by physical or mental activity.
Blood tests are often performed to rule out other underlying conditions, such as anaemia or an underactive thyroid. The process of obtaining a diagnosis can often be a long and frustrating one, but your doctor will be able to advise how to manage your symptoms in the meantime.
Myth four: People with chronic fatigue syndrome aren’t reliable workers
It may be wrongly assumed that those living with chronic fatigue don’t make reliable workers. This is a myth that must be debunked. If, or when, an individual feels up to doing so, work can provide those with CFS a sense of purpose and responsibility, helping them to feel valued. With support from occupational health teams and HR departments in the workplace, as well as regular contact with our GPs, we can be an asset to any team. I have found that freelancing and setting my own hours is something that works well for me, as I can take a break when needed.
Myth five: Nothing can alleviate the symptoms of chronic fatigue syndrome
In a bid to dispel this myth, I spoke with Dr Deepali Misra-Sharp, who is an NHS GP.
“CFS is a condition without a definitive cure, but it’s a misconception to think that symptom relief is impossible,” Dr Misra-Sharp explains. “As a GP, I often advise patients on practical, evidence-based approaches that can provide meaningful improvements in daily functioning and quality of life. According to the latest NICE guidelines [2021], managing CFS/ME is centred on personalised care plans that reflect each patient’s unique needs, as the severity and symptom presentation can vary widely.”
Dr Deepali Misra-Sharp shares that recommendations include pacing and maintaining an ‘energy envelope’ – essentially balancing activities with rest to avoid post-exertional malaise (PEM), a common symptom where physical or mental exertion leads to a significant worsening of symptoms. Cognitive behavioral therapy (CBT), not as a cure, but as a means of managing the emotional strain and anxiety that often accompany chronic illness, is also recommended, along with sleep hygiene and lifestyle adjustments, and nutrition and managing co-existing conditions.
As the ME Association highlighted that the number of cases of CFS could be on the rise (in part due to its relationship to long Covid), it’s about time that we busted some of these common myths for good, so individuals and their loved ones can make informed, evidence-based decisions about their next steps.
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