Misunderstood THE
DISEASE
BY ROSALIND TULLOCH
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a neurological disease that affects around 265,000 people in the UK, and yet it is still surrounded by a cloud of misunderstanding. The first issue many people come across is the confusion between ME and CFS, are they the same or two different conditions? In short, they are the same, it just depends on the person giving your diagnosis and what term they use. Many organisations opt for using “ME, also known as CFS”, but the general consensus nowadays is to refer to it as ME/ CFS. Common misconceptions from the wider general public have been detrimental to the lives of the real people living with ME/CFS. It is not simply “feeling tired” as many uninformed individuals may muse, it is a recognised neurological disease that has debilitating symptoms that fluctuate continuously. A lack of education across the healthcare professions has also had a negative effect on the ME community. Leaving individuals feeling distressed, ignored and misunderstood. There is no simple diagnostic test for ME/CFS, which makes it very tricky to obtain an official diagnosis. ME/CFS presents itself differently within each individual and there is a long list of symptoms that can arise in patients. GPs will essentially have to diagnose by ruling out many other conditions and then are likely to use a list of indicators before confirming diagnosis. It can take years for some patients to receive a diagnosis.
The ME Association sets out seven key symptoms that are used to diagnose ME/CFS:
POST-EXERTIONAL MALAISE (PEM) This is the key diagnostic feature in patients with ME/ CFS. It refers to the way in which symptoms worsen after activity, effects of which can be delayed by 24-72 hours after activity
ACTIVITY- OR EXERCISEINDUCED MUSCLE FATIGUE Even after a small physical or mental exertion muscles can be in pain or tired
COGNITIVE DYSFUNCTION Short-term problems, difficulty concentrating, problems with word recall
PAIN Persistent and difficult to control, it can be muscular, rheumatic or neuropathic
SLEEP DISTURBANCE Insomnia, hypersomnia, vivid dreams and restless legs can all affect sleep quality
FLU-LIKE SYMPTOMS A general feeling of being unwell, accompanied by aches, a sore throat, sensitive glands and problems with temperature control
AUTONOMIC SYMPTOMS An inability to tolerate upright activity for any length of time, resulting in lightheadness, spatial disorientation, feeling faint and sweating after standing up. The NICE guidelines are currently being rewritten following pressure from ME organisations, charities and the wider ME community. This will hopefully help reduce diagnosis times and increase the understanding of ME/CFS in the medical profession and the wider public. It is important to raise awareness and educate the population on the facts and realities for people living with ME/CFS. By educating people on the debilitating effects that ME/CFS presents and sharing lived experiences, hopefully we can help to change society’s perceptions of ME/CFS and build a truer understanding of what it means to live with this disease.
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