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.

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

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

What is ME?

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.

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

Symptoms of ME/CFS

Common symptoms of ME/CFS include

  • feeling extremely tired all the time – you may find it very hard to do daily activities
  • still feeling tired after resting or sleeping
  • taking a long time to recover after physical activity
  • problems sleeping, such as waking up often during the night
  • problems with thinking, memory and concentration

Some people with ME/CFS may also have other symptoms, including:

  • muscle or joint pain
  • headaches
  • a sore throat
  • flu-like symptoms
  • feeling dizzy or sick
  • fast or irregular heartbeats (heart palpitations)

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

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

Diagnosing ME/CFS

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

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

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

Treating ME/CFS

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

While there is currently no cure for ME/CFS, there are treatments that may help you manage the condition.

Treatments include:

  • cognitive behavioural therapy (CBT)
  • energy management – where you’re given advice about how to make best use of the energy you have without making your symptoms worse
  • medicine to control symptoms such as pain and sleeping problems

Most people with ME/CFS will improve over time, especially with treatment, 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 ME/CFS are more likely to recover fully.

Causes of ME/CFS

It’s not known what causes ME/CFS, 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 ME/CFS include:

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

Living with ME/CFS

Living with ME/CFS 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.

ME/CFS 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 ME/CFS.

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

You can find a local support group on the ME Association website