Feeling tired after a long day at work or staying out too late is one thing, but feeling constantly exhausted after staying in and getting a good night’s sleep is another.
Myalgic encephalomyelitis (ME) may be a term you’ve never even heard of before. This debilitating condition impacts 250,000 people in the UK alone, and around 17 million people worldwide.
ME is a complex chronic illness of unknown origin with an array of symptoms that can impact the suffers’ life on a spectrum ranging from mild, moderate, severe to very severe.
READ MORE: Map of Liverpool could be divided up into 13 neighbourhoods in major change
According to the NHS website, ME can affect anyone including children and is a long-term condition with a wide variety of symptoms, most commonly extreme tiredness. Persistent fatigue and post-exertional malaise (PEM) are the most commonly reported features of this condition, where the sufferer will experience a drastic flare-up of symptoms for a longer period of time.
As stated by the NHS website, here are the symptoms of ME to look out for
Symptoms
- Fatigue
- Post-exertional malaise
- Flu-like symptoms
- Muscle or joint pain
- Muscle weakness
- Headaches/Migraines
- Sore throat/tender lymph nodes
- Swollen glands
- Cognitive difficulties (brain fog)
- Fast or irregular heartbeats (heart palpitations)
- Exercise intolerance
- IBS or stomach issues
- Sensitivity to light, sound & smell
- still feeling tired after resting or sleeping
Some other less common symptoms are
- Nerve pain
- Thermo-regulation dysfunction (temperature issues)
- Hypermobility
- Twitching muscles or cramps
- Orthostatic intolerance (inability to stand for long periods)
- Poor circulation
- Insomnia
- Nausea
- Allergies and sensitivities to foods, odours, chemicals
- Memory issues
- Shortness of breath
Previously, this unusual illness has been branded psychological, often related to ‘hysteria’ due to more women than men suffering from the condition. Cases of Long Covid, following the pandemic, have had a drastic impact on the research and stigma of ME due to their similar nature.
This has allowed crucial research to be done into ME alongside Long Covid. A few studies are currently being done in the UK as well as in America investigating these potential causes.
One feasibility study has been conducted by the University of Liverpool, where they measured oxygen consumption, heart rate, blood pressure, lactic acid levels and activity in both ME and Long Covid patients. The results of this study are yet to be published.
Causes
At the moment it is not known what causes the condition. It is thought it may be caused by a viral infection such as glandular fever. Other theories include it being linked to genetics, problems with the immune system or a defect in energy production.
The ME charity, ME Association claims the causes of the condition are unknown, but some studies have suggested a defect in the energy-producing components of muscle cells, called mitochondria, could be responsible.
Diagnosis
There is no test for ME, only ruling out other similar medical conditions such as Fibromyalgia, Long Covid, Hypothyroidism, Lupus, Lyme disease, Postural tachycardia syndrome, multiple sclerosis or another underlying health issue. After ruling these out, the GP will either diagnose the patient with ME based on their symptoms or refer them to a specialist often within a local ME/CFS service.
Management
In the past, graded exercise therapy (GET) was the recommended treatment but this was quite recently debunked. GET is a type of therapy where exercise is gradually introduced with the idea that it can increase energy limits and reduce symptoms.
We now know that this treatment was actually detrimental, causing many ME patients to worsen their condition, with some even losing their lives. The NHS website states: “Graded exercise therapy (GET) – which aims to gradually increase physical activity levels - is not recommended for people with ME/CFS”
Currently, the recommended forms of management from the NHS website include energy management, pacing, pain medication, cognitive behavioural therapy (CBT) and anti-depressants to aid with the mental health effects of the condition.
People dealing with ME who have a milder form of the illness can usually go about their lives as normal, by introducing a few reasonable adjustments at work and making some lifestyle changes to accommodate their symptoms.
This may include agreeing to reduced time spent standing up/walking if applicable, decreasing certain workloads, changing hours, implementing a diet more suited to the individual's intolerances, and tracking activities for energy management along with pacing.
It’s essential to understand each person's experience with ME will differ due to this illness’s unique symptoms.
