About M.E
So what is M.E/CFS:
Put simply, Myalgic Encephalomyelitis (M.E) is a long term (chronic) illness with a wide range of symptoms, but most predominantly recognised by extreme fatigue. Therefore M.E is also referred to as Chronic Fatigue Syndrome (CFS).
As sufferers state that symptoms, other than fatigue, are equally or more limiting to a person's ability to carry out ordinary daily activities, the terminology and naming of this illness has been frequently debated. Whilst chronic fatigue seems overly-simplistic and demeaning to a persons symptoms, the term M.E (Myalgic referring to muscle symptoms and Encephalomyelitis referring to inflammation of the brain and spinal cord) has not yet been scientifically confirmed.
Guidelines for the NHS and the English health watchdog NICE, refer to this illness as M.E/CFS combined.
What are the symptoms of M.E/CFS:
- Whilst extreme tiredness or fatigue is used most commonly, it is felt too generic a term to adequately account for the sleep disturbances sufferers experience. These can be characterised by a non-refreshing pattern, both excessive sleep or insomnia, reversal of sleep rhythm/pattern, vivid dreams and ‘restless legs’.
- widespread pain
- Visual disturbances / Sensitivity to light
- Sensitive to extreme temperature changes / difficultly maintaining own body temperature
- Nausea, dizziness or feeling lightheaded/faint
- Inflammation/swelling to glands
- Cognitive Dysfunction (brain fog)
- Irregular Heartbeat
- IBS
- On-going flu like symptoms
Symptoms vary in severity and frequency from person to person and can alter daily for each individual. Symptoms are known to be exacerbated (made worse) by exertion.
Basically, imagine the worst hangover of your life. Add whiplash or concussion. Add jet-lag/just landed from a long-haul flight. Add flu or similar viral illness. That’s generally how we feel everyday.
Who does M.E/CFS affect:
Its estimated that 250,000 people in Britain alone have a M.E/CFS diagnosis. M.E/CFS is a non-discriminatory illness, meaning that men, woman and children of all ages, ethnicities, lifestyles etc can be diagnosed, however, woman aged 20-40 are the prominent percentage.
M.E/CFS is also the leading cause of children’s long-term absence from school in the UK.
What causes M.E/CFS:
Honestly, nobody knows. Although it is estimated that 60 percent of cases occur after a viral illness such as glandular fever. The nature of the illness is also highly debated - is it a physical, neurological or psychological? A mixture? Something else? 🤷🏼♀️
How is M.E/CFS Diagnosed:
Process of elimination.
Basically there is no definitive test that can diagnose M.E/CFS. However scans, tests and investigations can be used to rule out other illnesses.
How is M.E/CFS treated:
Essentially, it’s not.
There is no cure, treatment, procedure or medication that can eradicate this illness. What the NHS/health professional can prescribe is a management plan. This may include medications to help reduce particular symptoms or regular tests and investigations to monitor others. Current clinical guidance here in the UK advocates a heavy psychological approach, recommending cognitive behavioural therapy (CBT), courses in pacing and strategies to control depression/stress/anxiety.
The most controversial recommendation is graded exercise therapy (GET). GET encourages sufferers to do regular, light physical activity with gradually increased levels of activities. The idea is to get the person used to being active and increase their tolerance.
Whilst some professionals state there is good evidence that GET is safe and useful for patients, some argues it can actually do serious harm. Health professionals and patients alike have fought to have GET removed from the guidelines completely, claiming that if they do too much physical activity, they make themselves more weak, fatigued and can experience a relapse of all their symptoms. Relapses can last for months at a time.
At the moment, NICE is updating its guidelines for treatment and is expected to be published in 2020.
What help is available and more information:
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