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What is ME?

Myalgic encephalomyelitis 

ME, or myalgic encephalomyelitis, is a chronic (long-term) neurological condition with fluctuating symptoms. A person with ME will have symptoms in many areas of the body including the immune system and central nervous system.

According to the ME Association, approximately 265,000 people in the United Kingdom are affected by ME and there are around 17 million sufferers worldwide. It affects both adults and children and people of all ethnic and socioeconomic backgrounds. ME can lead to a lower quality of life than both cancer and MS (multiple sclerosis). ME is also called CFS (chronic fatigue syndrome).

What is ME?

Myalgic encephalomyelitis is often shortened to ME. If we look into the etymology or the name, ‘myalgic’ pays reference to muscle pain, which is commonly experienced by ME sufferers. ‘Encephalomyelitis’ refers to inflammation (‘itis’) of the brain (‘encephalo’) and spinal cord (‘myel’).  Essentially, it means the brain and spinal cord are inflamed.

ME/CFS is often triggered by a flu-like illness or viral infection. People with ME will often have symptoms in the CNS (central nervous system), ANS (autonomic nervous system), the immune system, the musculoskeletal system, the endocrine system, the cardiovascular system and the digestive system.

Full recovery from ME is rare and no cure has been found. However, symptoms can improve and be stabilised with the right support and management.

Man with pneumonia at risk of ME

What causes ME?

The cause of ME or CFS is unknown. Many experts believe it is triggered by an infection or other factors that make you more prone to developing the condition.

Some possible triggers of myalgic encephalomyelitis include:

  • Viral infections like glandular fever.
  • Bacterial infections like pneumonia.
  • Hormonal imbalances.
  • Problems with a person’s immune system.
  • Genetics (there seems to be some family links).

Who is more at risk of ME?

Anyone can be affected by ME, including children. However, it is more common among people in their mid-20s or mid-40s.

Biological sex

It also affects more women than men, which suggests female hormones could play a role – particularly as it’s also more common in the mid-40s when women become perimenopausal. According to WebMD, women are four times more likely to suffer from ME than men.

Genetics

ME can run in families. This means it’s likely that some people inherit the risk of developing ME from a parent. This could be something like inheriting a genetic defect. How genes ‘turn on/off’ will also play a role. With ME sufferers, there are often gene activity differences in their white blood cells, for example.

Having other medical conditions

If a person has other medical conditions, their risk of developing ME increases.

Examples of such medical conditions include:

  • IBS (irritable bowel syndrome).
  • Fibromyalgia.
  • Multiple chemical sensitivities.
  • TMJ/TMD (temporomandibular disorders).
  • Tension headaches.
  • Post-concussion syndrome.
  • Chronic prostatitis (men).
  • Chronic pelvic pain (women).

What are the different types of ME?

A genetic study in 2008 revealed that there were seven subtypes of ME. The research was carried out by people at St George’s Hospital, University of London. The different subtypes of the disease were related to specific patterns of symptoms.

Here are the different types:

1. Type 1 – High levels of anxiety/depression and pain, poor sleep.

2. Type 2 – Joint/muscle pains, post-exertion fatigue is severe.

3. Type 3 – Mild disease.

4. Type 4 – Sleep problems and moderate pain.

5. Type 5 – Gut problems predominate, most severe muscle weakness.

6. Type 6 – Significant fatigue.

7. Type 7 – Swollen glands, headaches, high pain levels – most severe form.

In the research, type 4 and type 6 were the most common.

Severity definitions

There are no clear-cut definitions of severity as ME symptoms can vary day to day. But the following definitions are often used as a guide.

Mild ME

People who have mild ME are able to look after themselves and do lighter domestic tasks. They might have some mobility difficulties. Most people with mild ME are still able to work or study but in order to cope with this, they will probably not do any social activities or leisure pursuits. They might take regular days off, work part-time or recharge on a weekend to cope with the week.

Moderate ME

With moderate ME, there is likely to be reduced mobility and the person will be restricted in what they can do in their daily lives. There may be peaks and troughs, however. Usually, people with moderate ME no longer work or study and will need to rest in the afternoon for a couple of hours. At night, they’ll likely have poor, disturbed sleep.

Severe ME

With severe ME, people are usually unable to carry out daily tasks. They might only be able to clean their teeth or wash their face, for example, but not much more. There will be severe cognitive issues and they’ll likely need to use a wheelchair to get around.

People with severe ME are often not able to leave their house or if they do, they might suffer from a prolonged after-effect. Those with severe ME will often spend a lot of their time in bed.

Severe ME often comes with sensitivity to sound and light.

Very severe ME

With this severity of ME, people are usually bedbound and dependent on others for all of their care. They will need help with eating and personal hygiene and will also be extremely sensitive to sensory input.

If swallowing is affected, tube feeding will happen.

Suffering with very severe ME using wheelchair

What are the signs and symptoms of ME?

The main signs and symptoms of ME or CFS are feeling generally unwell and extremely tired. The symptoms do vary from patient to patient, and they can be fluctuating and vary day to day. Let’s take a look at these symptoms in more detail.

Extreme tiredness (fatigue)

The most predominant symptom of ME is extreme fatigue – both physical and mental. With this level of tiredness, rest and sleep don’t make it go away. This means that it’s really difficult to do everyday activities and tasks.

Most people with the condition describe it as being an overwhelming tiredness and different from anything they’ve ever experienced before.

Doing exercise will typically make a person feel worse. Sometimes, this will have a delayed effect and the person will feel extremely tired a couple of hours after exercising, or even the following day.

Sleep problems

People who have ME also have problems sleeping. They will often not feel refreshed after having slept and will feel as though they still need a good night’s sleep. They will also wake frequently during the night.

In the morning, people with ME often feel very tired and stiff and can even experience flu-like symptoms.

During the day, they’ll feel very tired and sleepy.

Concentration, thinking and memory problems

With ME, it is common to have problems with cognition.

These symptoms are often encompassed in the term ‘brain fog’ and can include:

  • Problems remembering names, words or numbers.
  • Finding it difficult to concentrate on anything/more than one thing.
  • Problems with short-term memory.
  • A slowness in reaction to things or in speech.

Other ME symptoms

As we’ve said previously, symptoms vary from person to person and even throughout the day/week.

As well as problems with tiredness, sleep and cognition, people with ME often experience:

  • Joint or muscle pain.
  • Sore glands/throat (no swellings).
  • Headaches.
  • Flu-like symptoms.
  • Dizziness.
  • Nausea.
  • Heart palpitations.

How does ME affect someone’s life?

Living with myalgic encephalomyelitis is difficult. Physical symptoms combined with extreme fatigue make daily living a challenge and often require major changes to lifestyle, including giving up studying or working.

It’s no surprise then that ME can also affect a person’s emotional and mental health and can have a negative effect on their self-esteem.

Living with ME

It’s safe to say that living with ME is not easy and it can take a lot of getting used to. To live as well as possible with ME, patients need to be mindful of their personal limits.

This means finding a balance between the activities they can do and the rest they need. With a good balance, they will feel more like they’re managing their illness rather than it controlling them.

People who live with ME might find even the simplest of tasks cause them to ‘crash’ or relapse. This might be buying groceries, interacting with people, or brushing their teeth, for example. It might be tempting to ‘push through’ when having a good day but this might have a negative effect the following day.

How is ME diagnosed?

There is no definitive test for ME/CFS but doctors use guidelines to help them diagnose it.

The first port of call is usually the patient’s GP who will ask about medical history and do a physical examination.

The GP might refer the patient for tests like urine tests or blood tests to rule out other possible conditions like anaemia, kidney and liver problems, or an underactive thyroid gland.

Diagnosing ME can take a little while because it can appear like other conditions that have to be ruled out.

Guidelines for diagnosing ME/CFS

The National Institute for Health and Care Excellence (NICE) states that doctors need to consider an ME diagnosis if a person has extreme fatigue that can’t be explained otherwise.

The fatigue will:

  • Have started recently.
  • Keeps returning or has lasted a while.
  • Stops you from doing things you used to be able to do.
  • Becomes worse after gentle exercise like a short walk or other activity.

As well as fatigue, you’ll also have some symptoms from this list:

  • Insomnia or other sleep problems.
  • Joint or muscle pain.
  • Headaches.
  • Sore throat/glands (no swelling).
  • ‘Brain fog’.
  • Nausea.
  • Dizziness or vertigo.
  • Flu-like symptoms.
  • Heart palpitations.
  • Symptoms that worsen if you’ve had to concentrate or you’ve done exercise.

All of these symptoms are similar to those in other illnesses but the difference is that they haven’t got better like you would have expected. A doctor will usually only diagnose ME if they have ruled out all other conditions and if the symptoms have lasted for three months.

Woman with a headache as a symptom

How is ME treated?

Though there are no specific treatments for ME itself, there are treatments for the symptoms. Essentially, treatments are designed to improve symptoms.

ME often means making lifestyle changes and adapting the daily routine and activities.

ME treatment plans

There isn’t one set way of treating ME because everyone experiences it differently. NICE (the National Institute for Health and Care Excellence) says patients should be offered tailored treatment plans.

Here are some of the treatments people with ME have:

Cognitive behavioural therapy (CBT)

Mild to moderate ME patients are usually offered CBT. This is a talking therapy that helps people change how they think and behave. This doesn’t mean doctors believe ME is a psychological condition, but it is useful in helping people to adapt to the necessary changes they will need to make as a result of their diagnosis.

Energy management

This therapy aims to help patients learn how to use their energy levels to their advantage without worsening their symptoms.

Sometimes people are prescribed an exercise plan, but not always.

Medicine

While no medication will treat ME, it can be used to manage and relieve symptoms.

Paracetamol and ibuprofen, for example, can be taken for any aches and pains. A GP can also prescribe stronger pain relief on a short-term basis. If long-term severe pain occurs, a patient will often be referred to a pain clinic.

Antidepressants are also often prescribed to patients with ME. Not only do these help people deal with the lifestyle changes but some (like amitriptyline) can also help to ease pain in the muscles. Patients might also find physiotherapy useful.

Lifestyle changes

One of the most important aspects of ME treatment is a change in lifestyle.

Diet and supplements

Eating a regular, healthy and balanced diet is important. If ME symptoms make shopping for and preparing food difficult, you can ask for advice on this.

If nausea is a problem, you can be prescribed anti-sickness medication.

Diets that don’t include all food types aren’t recommended.

Sleep, relaxation and rest

Sleep problems are common in ME and they can also make symptoms worse.

Some sleep problems are:

  • Not being able to get to sleep.
  • Sleep feeling restless or unrefreshing.
  • Needing excessive amounts of sleep.
  • Sleeping in the daytime but being awake at night.

A doctor or nurse will be able to advise on establishing a normal sleep pattern. If you have too much sleep, your symptoms won’t improve and daytime sleep will also have a knock-on effect on night-time sleep.

People with severe ME who spend a lot of time in bed can end up with blood clots and pressure sores so it’s important to know how to prevent this.

Other lifestyle changes to manage myalgic encephalomyelitis

There are other things ME sufferers can do to manage their condition:

  • Equipment – things like stairlifts, wheelchairs, home adaptations and a blue badge.
  • Changes at work/school as appropriate.

Final thoughts on myalgic encephalomyelitis

ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) as it’s also called, is a neurological condition with symptoms that fluctuate. Though there is no known cure, symptoms can be treated and managed with medication, therapy and changes to lifestyle. Though the condition is more common in women and those between their mid-20s to mid-40s, it can affect anyone at any time.

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About the author

Louise Woffindin

Louise Woffindin

Louise is a writer and translator from Sheffield. Before turning to writing, she worked as a secondary school language teacher. Outside of work, she is a keen runner and also enjoys reading and walking her dog Chaos.



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