About ME

Smile For ME is a charity run by people affected by ME. We do not have any medical professionals involved in our charity as our charity’s objective is sending Smiles to brighten the days of those affected by ME. Information about ME on this page is taken from the NHS website. The National Institute for Health and Care Excellence (NICE) guidelines are currently being updated. Check out other ME charities for relevant and up to date information about ME.

Decode ME

Decode ME is the largest ever biomedical study of ME/CFS. They have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and, if so, help pinpoint what causes it. The study should help them understand the disease and ultimately find treatments. They are currently recruiting 20,000 participants. For more information and to find out how to get involved go to their website decodeme.org.uk

Share a story

We raise awareness of ME through sharing personal stories from people affected by ME with a segment in our monthly newsletter called ‘Share a story’. To read those stories click the link smileforme.org.uk/shareastory

What is ME?

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

CFS/ME can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s.

New guidelines on CFS/ME are currently being developed by NICE. The draft guidelines suggest structured exercise programmes, such as graded exercise therapy (GET) will no longer be recommended to treat CFS/ME.

Symptoms of chronic fatigue syndrome (CFS/ME)

The main symptom of CFS/ME is feeling extremely tired and generally unwell.

In addition, people with CFS/ME may have other symptoms, including:

  • sleep problems
  • muscle or joint pain
  • headaches
  • a sore throat or sore glands that are not swollen
  • problems thinking, remembering or concentrating
  • flu-like symptoms
  • feeling dizzy or sick
  • fast or irregular heartbeats (heart palpitations)

Most people find overexercising makes their symptoms worse.

The severity of symptoms can vary from day to day, or even within a day.

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, so it’s important to see a GP to get a correct diagnosis.

Diagnosing chronic fatigue syndrome (CFS/ME)

There is not a specific test for CFS/ME, so it’s diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.

Your GP will ask about your symptoms and medical history. You may also have blood and urine tests.

As the symptoms of CFS/ME are similar to those of many common illnesses that usually get better on their own, a diagnosis of CFS/ME may be considered if you do not get better as quickly as expected.

Find out more about diagnosing CFS/ME

Treating chronic fatigue syndrome (CFS/ME)

Treatment for CFS/ME aims to relieve the symptoms. Your treatment will depend on how CFS/ME is affecting you.

Treatments include:

  • cognitive behavioural therapy (CBT)
  • a structured exercise programme called graded exercise therapy (GET)
  • medicine to control pain, nausea and sleeping problems

Most people with CFS get better over time, although some people do not make a full recovery.

It’s also likely there will be periods when your symptoms get better or worse.

Children and young people with CFS/ME are more likely to recover fully.

Causes of chronic fatigue syndrome (CFS/ME)

It’s not known what causes CFS/ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.

Suggested causes or triggers for CFS/ME include:

  • viral infections, such as glandular fever
  • bacterial infections, such as pneumonia
  • problems with the immune system
  • a hormone imbalance
  • mental health problems, such as stress and emotional trauma
  • your genes – CFS/ME seems to be more common in some families

Living with chronic fatigue syndrome (CFS/ME)

Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.

CFS/ME can also affect your mental and emotional health, and have a negative effect on your self-esteem.

As well as asking your family and friends for support, you may find it useful to talk to other people with CFS/ME.

ME Association is a charity that provides information, support and practical advice for people affected by the condition.