A Brief Guide for people with ME/CFS  

What is ME?

ME stands for Myalgic Encephalomyelitis (or Encephalopathy), also known as Chronic Fatigue Syndrome (CFS). Its cause and exact definition are not fully understood, so the term covers what may really be a number of different illnesses with overlapping symptoms.

ME often starts after a virus infection from which you are unable to recover. It may come on rapidly, or creep up on you over a long period of time. Different people are affected with varying degrees of severity, from being bed bound to leading relatively normal lives but needing lots of rest. 

Symptoms can fluctuate from day to day or over longer periods, making planning difficult. ME affects all the body's systems, giving rise to an enormous number of symptoms, which make it very difficult to diagnose. There is currently no generally accepted diagnostic test available and diagnosis is based on close examination of the symptoms and careful elimination of other diseases, which involve fatigue and can be treated. 

The illness has been around for years but is only recently beginning to receive proper recognition. “Mainstream” treatment is still at the research stage and some doctors may be reluctant to diagnose it in the absence of a clear test.

What are the main symptoms of ME?

The main symptom of ME is the overwhelming feeling of exhaustion (both mental and physical), unrelieved by rest or sleep and made worse by even the smallest amounts of activity. Other possible symptoms include:

  • Poor concentration or memory
  • Painful muscles and/or joints
  • Sore throat, swollen glands, fluey feeling
  • Disturbed sleep patterns
  • Digestive disturbances, food tolerances
  • Balance problems 
  • Sensitivity to light and noise 
  • Anxiety, depression and mood swings      
(Depression is more often a reaction to being ill than a symptom of the illness itself).

Symptoms must be present for 4 months before a diagnosis of ME will be made.                    

Who can get ME?

ME can affect anyone, regardless of age, ethnicity or background. Children get it as well as adults, and sometimes several members of one family can have it.

Will I get better?

This is difficult to predict - some people do get better, others remain very ill and most fall somewhere in between. What is certain is that the earlier you begin to manage the illness with rest and pacing, the better the prospects are for recovery, but whatever stage you are at, there are things you can do to improve your level of well being and make your life better.

What can I do to help myself?

Rest, more rest and not overdoing it is probably the best advice but is often easier said than done.
Most people with ME have a drive to do things,especially when they are feeling a bit better, but this simply worsens their condition. It can take strength, not only to control your own desire to do more, but also to ignore well meant but unhelpful encouragement from others to push yourself.

Try and get into the routine of doing a little and then resting before your next activity as pacing yourself does help in preventing relapses. Remember physical and mental activity can wear you out.

Most sufferer’s benefit from altering their diet,and perhaps taking supplements. Unfortunately there is no single treatment that helps everyone but many people do improve with various orthodox or complementary therapies.

Whoever else you may see, the help of an understanding GP is invaluable in managing your illness, and you will need their support if applying for benefits, or seeking assistance from Social Services (for home helps, aids and adaptations etc.)

How do other people respond to ME?                                    
Although ME causes massive disruption to people's lives, careers, relationships and families, it is not always looked on sympathetically. In our society, which places so much importance on doing and achieving, it is difficult to understand an illness, which is made worse by activity. This can affect the attitude of anyone, form professionals to friends and family - even sufferers themselves.

Learning to cope                                                                        
The first step is to accept what has happened. The second is to learn a whole new lifestyle to cope with your illness.
You will find that it is a long slow process with one step back for several two forward, at the beginning at least. You will have to come to terms (as will your family and friends) with relapses, disappointments, setbacks and sheer frustration. Having said all that, there is life with ME, albeit different from the one you have known.

Most suffers do remain very positive about their lives in spite of their limitations.

Disclaimer: - Posted links are for awareness purposes only. Our intention is to support individuals in making informed decisions. Treatments are not necessarily advocated by the Group and are tried at the individual’s own risk.

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