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What is ME?
What is ME? Myalgic encephalomyelitis (ME) also known as encephalomyelitis is a long-term, fluctuating, neurological disease. ME symptoms affect many systems of the body, including the nervous and immune systems. This article covers symptoms, ME treatment and support.
ME is a debilitating disease. Around 25% of people with ME are severely affected by the condition and are housebound or bedbound.
Is ME a serious condition?
ME is not a minor illness and can vary in severity from person to person.
National Institute for Health and Care Excellence (NICE) guidelines for ME (published October 2021) describes four levels of severity of ME:
- People with mild ME can look after themselves and do some light domestic tasks but may have difficulties with mobility. Most are still working or in education. They often have reduced hours and take days off.
- If you have moderate ME, you may have reduced mobility and are restricted in all activities of daily living. You may have peaks and troughs in symptoms and ability to do activities. You have usually stopped work or education.
- Those with severe ME are unable to do any activity for themselves or can carry out minimal daily tasks such as cleaning teeth. They have severe cognitive difficulties. They are often housebound and may also spend most of their time in bed.
- If you have very severe ME, you are in bed all day and dependent on care. They need help with personal hygiene and eating. Some people may not be able to swallow. They are very sensitive to sensory stimuli.
Why is it called ME?
ME is the medical name that was introduced by The Lancet to describe an outbreak at the Royal Free Hospital in London in 1955.
The condition was renamed as CFS (Chronic Fatigue Syndrome) by doctors in the UK but people with ME, charities and some health professionals, do not think CFS is a fitting name to highlight the extent of the impact on someone with ME.
ME is the name preferred by those who have the condition.
How common is ME?
The condition is estimated to affect over 260,000 people in the UK.
It tends to affect people aged 20-40.
However, there are also children and people aged 65+ with ME
What causes ME?
The causes of ME are unknown.
ME is thought to be triggered by one of these factors:
- a viral or bacterial infection.
- a traumatic event.
- hormonal imbalance.
- immune system issues.
- genes.
According to the ME Association, ME research has found major abnormalities in a person with ME’s central nervous system, immune system, endocrine (hormone producing) system and muscles (which cause energy metabolism impairment).
People with ME often report that they don’t feel as though they have recovered from symptoms even after an infection has passed.
Symptoms of ME
Symptoms of ME can vary in type and intensity during a single day and from day to day, which make symptoms hard to manage.
ME symptoms can include:
- Extreme exhaustion. Post-exertional malaise/symptom exacerbation (PEM) often with a delayed impact that lasts days or weeks. It can follow even minor physical or mental activity. A person can have activity-induced muscle fatigue and weakness triggered by small exertion (physical or mental).
- Cognitive dysfunction – problems with short-term memory, forgetfulness, concentration, ‘brain fog’.
- Sleep problems – sleeping too little or too much, sleep that fails to make the person feel refreshed when they wake up.
- Continuing flu-like symptoms including sore throats, headaches, enlarged glands, fatigue.
- Speech difficulties.
- Swallowing difficulties.
- Problems with balance.
- An inability to remain standing upright. Issues with pulse and blood pressure control leading to feeling faint and/or dizzy.
- Pain including in muscle, joints and nerves.
- Low immunity leaving you more susceptible to infections.
- Inability to regulate body temperature.
- Extreme sensitivity to light and sound.
- Gastrointestinal symptoms.
- Alcohol intolerance.
How do you diagnose ME?
There is no blood or other diagnostic test available to identify ME. GPs rule out other conditions that could cause symptoms before diagnosing ME.
What impact can ME have on someone’s life?
- Some people may have to give up their job or studies because ME leaves them unable to work. If they are working, they may take long periods off sick.
- Living with ME can affect a person’s family and relationships.
- It can impact on a person’s finances and their financial stability.
- The person may experience social isolation and reduced self-esteem.
- A person with ME can experience mentaI health issues including anxiety or depression as well as feelings of helplessness.
What’s it like to have ME?
Everyone’s experience of having ME is different. Some people’s lives are more severely impacted by ME than others.
‘I just want to chop off my limbs – that is how it makes me feel’
A 51-year-old woman who was diagnosed with ME at the age of 25, said: “The pain I endure is so bad at times I just want to chop off my limbs. Extreme I know but that is how it makes me feel.
“The fatigue and breathlessness gets me down. From walking 5+ miles a day to struggling to walk to the bathroom (which is downstairs) is soul breaking, exhausting to eat, to talk, not being able to always find the right words in conversation.
“I haven’t driven for three months, as not safe to, so the condition does take away independence.
“Day to day is different and so unpredictable. It’s not nice living with the condition. It’s frustrating when unable to do things, frustrating no medication helps.”
Sam told the support group Action for ME: “It’s like having glandular fever, taking your glandular fever on an all-night drinking binge, then taking your glandular fever and your hangover and doing a 30km forced march over the Brecon Beacons.
Another Action for ME supporter said: “I feel like I wake up with a mattress on me most mornings. When I wake up with post-exertional malaise, there is an elephant sitting on the mattress.
“He stays there for days. He steals my words and fills my brain with wet cotton wool and wraps his trunk around my neck, so I struggle to swallow.”
ME is an ‘invisible’ disability
The 51-year-old added: “The hardest part with the condition is people not understanding, because you look ok”.
ME is a hidden disability in that people cannot immediately see.
A non-visible disability can be physical, mental or neurological and means others cannot immediately ‘see’ the reason why a person may be struggling or behaving in a specific way.
You can also read advice about non-visible disabilities.
Can you cure ME?
There is currently no cure for ME but there are treatments that could help manage the symptoms of ME
Some people with ME may gradually, steadily improve, other people’s ME stabilises into a pattern, while some have severe symptoms that leave them wheelchair bound, housebound and even bedbound.
Children with ME are more likely than adults to make a full recovery.
Treatments for ME
Treatments that can help manage symptoms include:
Medicine
People with ME can suffer from headaches as well as muscle and joint pain so non-prescription painkillers can be used to ease the pain.
For more severe pain, GPs can prescribe stronger painkillers.
You may be prescribed antidepressants to help cope with the pain or to help with sleep problems.
Energy management
Energy management involves making best use of the energy an individual has without making symptoms worse. Activity management involves finding a balance between activity and rest so as not to exacerbate symptoms – also known as pacing.
Eleanor Chambers was diagnosed with ME in 2015 after becoming ill as a young student during her first year at university. Her second year, she writes in a blog for gov.uk, was spent ‘mainly horizontal, as I experienced post-exertional malaise, dizziness and intense brain fog’.
Eleanor attended an ME clinic at university and spoke to an occupational therapist who taught her about energy pacing. Making each day less energy intensive involves planning ahead to work out how to use the limited energy.
She describes how she manages her ME using a concept linked to spoons. Each spoon refers to a unit of energy. Someone without ME may have unlimited spoons to use but a person with ME only has a limited number of spoons a day. The number of spoons they have each day can fluctuate vastly.
“In my current experience, showering uses one, preparing three meals takes five. An average day at work could use between 10 to 15 spoons. If I want to read, watch TV, or call a friend after work, that’s around another two spoons for each activity. Going for a walk is about three spoons.
“Based on this calculation, I would have used somewhere between 25 to 30 spoons that day, which exceeds the 20 spoons I began the day with. This would result in a flare in my symptoms, likely making me bedbound for a day or two”.
Mental health support
It is important to deal with any emotional, psychological issues that arise as a result of the impact ME can have on a person. This includes treatment for anxiety, depression, suicidal thoughts.
Support Groups
Support groups provide a social benefit to people with ME as well as the chance to share tips on how to cope with living with ME
The ME Association and Action for ME are patient support charities. The ME Association’s ME Connect helpline Freephone number 0800 538 5200.
Cognitive Behavioural Therapy (CBT)
CBT is a talking therapy which teaches coping skills for dealing with different problems. It looks at how a person’s thoughts, beliefs and attitudes affect their feelings and actions. This can help someone better cope psychologically with the condition.
How can you support someone with ME?
- You can tell a person with ME that it is alright to rest if they don’t feel able to do a task.
- Read up about the condition to understand what the person is going through and what treatments are available.
- Provide emotional support to enable the person to express how they feel, what they want and vent about any frustrations and sad feelings they have.
Home care
If you have ME, you may need support in their own home which is linked to how severely you are affected by the condition.
Individuals with mild ME can do some light domestic tasks but may have difficulties with mobility. People with moderate ME have reduced mobility and may need help from a care worker who may visit the home regularly to complete daily activities such as preparing meals and assistance going to medical appointments.
If you have severe ME, you need more home care support to do any activity including personal care such as help to shower and get dressed. They may have severe cognitive difficulties and may depend on a wheelchair for mobility. Individuals are often unable to leave the house and may also spend most of their time in bed.
They may benefit from live-in care or other types of home care.
People with very severe ME are in bed all day and dependent on care. They need help with personal care including going to the toilet, washing and eating.
Some people may not be able to swallow and may need to be tube fed and 24-hour home care.
You can also read about the different types of home care available.
Care homes
A person with severe ME may move into a care home to have their needs met. You can find more details about what to consider when moving to a care home here.
