Real People. Real Disease. Real ME. Making the invisible visible

It's a condition surrounded by controversy. So what are the facts?

ME Awareness Week runs from 6th to 12th May 2019. The focus this year is the Real ME.

What is ME?

ME (myalgic encephalomyelitis) is also known as chronic fatigue syndrome (CFS). It is characterised by extreme, unrelenting exhaustion. It affects 250,000 people in the UK and is more common in women. It’s symptoms mean that it can drastically reduce a person’s ability to function.

One in four people are so severely affected that they are rendered housebound or bedbound – with some being reliant on 24-hour care. They are often confined to their beds, unable to walk, are extremely sensitive to light and sound and can require tube feeding.

Even minor exertions – such as talking, reading, sitting up in bed or trying to stand can result in worse symptoms and trigger relapses. There is no known cure or effective treatment and worse still, there remain vast misconceptions – even in medical circles – that ME is ‘made up’, ‘in the mind’ or even ‘just laziness’.

What are the symptoms of ME?

As mentioned, extreme tiredness is the main one but symptoms can vary. Some people manage quite well, while others are very disabled by it, being affected both mentally and physically. The main symptoms include:

  • Fatigue
  • Sleep problems
  • Muscle or joint pain
  • Headaches
  • A sore throat or sore glands that aren't swollen
  • Problems thinking, remembering or concentrating
  • Flu-like symptoms
  • Feeling dizzy or sick
  • Fast or irregular heartbeats (heart palpitations).

What triggers ME?

There are several schools of thought but generally it is thought the following may trigger ME:

  • Some form of viral infection, e.g. flu-like, glandular fever, respiratory tract infection, viral hepatitis, meningitis
  • Non-viral infections such as Coxiella burnetii/Q fever and bacterial meningitis can also precipitate ME
  • Less commonly reported triggers include certain vaccinations, e.g. hepatitis B, toxins, e.g. ciguatera poisoning, pesticide exposure (organophosphates) and major stressful life events
  • In a minority, there may not be an identifiable precipitating factor, and the onset may then be more gradual.

Diagnosing ME

There's no test for ME but there are clear guidelines to help doctors diagnose the condition. Your GP should ask you about your medical history and give you a physical examination.

They may also offer you tests like blood tests or urine tests to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems.

It can take a while for it to be diagnosed because other conditions with similar symptoms need to be ruled out first.  In the meantime, you may be given some advice about managing your symptoms.

Treating ME

Treatments for ME aim to help relieve symptoms. Your treatment will be tailored to your symptoms. Early diagnosis, taking medication to control certain symptoms, and making lifestyle changes can all help.

ME can last a long time, but most people's symptoms will improve with time. Some people make a full recovery and can return to their previous activities. Others continue to have symptoms or periods when their symptoms get worse.

What appears to be key is to get the right advice, as what works for some, does not work for others. Examples of things people have tried include:

  • Scientific advice by NICE
  • Some people respond to CBT or antidepressants
  • For others, graded exercise therapy and/or activity management may help
  • Lifestyle including dietary changes and making sure you get enough sleep may make a difference too.

The 11th edition of the ME Association's clinical and research guide is worth a read by those wanting to know more or take a look at their website.

What are the main symptoms of ME and possible treatments and management options?

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association explains (Dutch and English)

Watch the video