Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long-term, debilitating condition characterised by a combination of symptoms related to the immune, neurological and nervous systems. It is classed as a neurological condition by the World Health Organisation (G93.3).
Each person with ME CFS will have a different combination of symptoms individual to them. These will include malaise (feeling generally unwell), headaches, sleep disturbances, difficulties with concentration (brain fog) and muscle pain but the main, overriding symptom for all is fatigue. This fatigue is not “being tired”. Every adult is tired. The fatigue experienced by people with ME CFS is different. It is not relieved by rest or sleep.
The fatigue experienced by people with ME CFS is exacerbated by even the smallest of energy expenditure, known as post-exertional malaise, or “payback”, defined as the inability for the body or brain to recover after expending even small amounts of energy. This “payback” will often only kick in 24-48 hours after an activity, leaving the person utterly debilitated.
The NHS in the UK prefer to use the term chronic fatigue syndrome (CFS) instead of myalgic encephalomyelitis (ME) due to the fact that there is no clear, sound scientific evidence to prove the inflammation in the brain and spinal cord. However, the term ME is still used by medical professionals and patient groups alike. For the purposes of inclusion, and not to leave anyone feeling left out, I will refer to the condition as ME CFS throughout my writing.
Symptoms and Diagnosis of ME CFS
There is no single test for ME CFS (yet!) so a diagnosis is made by studying a patient’s symptoms but most importantly, ruling out other conditions that can cause these symptoms. NICE guidelines state that the symptoms have to have been present, and not explained by other conditions, for at least 4 months in an adult and 3 months in a child or young person. Read the guidelines here https://www.nice.org.uk/guidance/CG53
These guidelines state that in order for a diagnosis of ME CFS to be made, the following symptoms need to have been present:
a) Fatigue with all of the following features:
- new or had a specific onset (that is, it is not lifelong),
- persistent and/or recurrent,
- unexplained by other conditions,
- has resulted in a substantial reduction in activity level,
- characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days).
b) one or more of the following symptoms:
- difficulty with sleeping, such as insomnia, hypersomnia,
- unrefreshing sleep, a disturbed sleep–wake cycle,
- muscle and/or joint pain that is multi-site and without evidence of inflammation,
- painful lymph nodes without pathological enlargement sore throat,
- cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing,
- physical or mental exertion makes symptoms worse,
- general malaise or ‘flu-like’ symptoms,
- dizziness and/or nausea,
- palpitations in the absence of identified cardiac pathology.
Degrees of severity
The National Institute for Health and Care Excellence (NICE) in the UK state that the physical symptoms of the condition can be as disabling as multiple sclerosis, rheumatoid arthritis, congestive heart failure and other chronic conditions (clinical guidance CG53). However, there are degrees of severity to the condition. According to NICE, patients with ME CFS tend to fall under one of 3 categories. I personally am at the moderate level but during “crashes” I experience the description of the severe level below.
- ‘mild’ ME CFS – patients are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.
- ‘moderate’ ME CFS – patients can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.
- ‘severe’ ME CFS – patients are only able to do very basic daily tasks such as cleaning their teeth but may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.
There is no one single pill that can be taken to “cure” ME CFS so treatment tends to be focused on managing the symptoms of pain, sleep disturbances and abdominal difficulties. Patients with ME CFS will work with their medical team to find strategies that work for them. Pacing and lifestyle changes are some of the techniques used by people to help manage their symptoms. Some specialist teams are available around the country offering treatment plans that address the above techniques.
However, because there is no universal treatment, each individual has to find the strategies and techniques that work for them. This is a tough pill (sorry, terrible pun that) to swallow. It’s really hard to come to terms with that, I get it.
Through this blog I will aim to share some of the things that work for me, but it is important to note that this won’t necessarily work for everyone. It’s likely that those reading this blog will have already tried the techniques I’m writing about, so comment below, let me know what has worked for you. If not, enjoy reading and good luck. Contact me using the form above, and make sure you subscribe to receive my posts straight to your inbox.
I am not a medical professional and the information on this website should not be substituted for medical advice. The content of this blog are my own opinions, experiences and detail of what has worked for me. Always consult a medical professional before making changes to your treatment regime.
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