About ME/CFS

ME means Myalgic Encephalomyelitis and is the name that most people use.

CFS stands for Chronic Fatigue Syndrome which is the term doctors prefer nowadays.

The term PVFS (Post Viral Fatigue Syndrome) is also used in cases where the condition was triggered by a viral illness at the outset and during the next six months.

ME/CFS is classified by the World Health Organisation as:

“a disease of the central nervous system”. 

In 2002 the Government’s Chief Medical Officer accepted a Working Group Report which confirmed that ME/CFS is a debilitating and distressing condition affecting many people. 

The Report also dismissed the notion that ME/CFS “is all in the mind”. 

The illness may develop gradually or occur as a result of an acute infection or virus.

It can affect anyone. 

It is estimated that at least 250,000 people in the UK suffer from this illness.

Symptoms can include: 

  • Severe delayed fatigue after minor exertion

  • Memory problems

  • Sleep disturbances

  • Pain in muscles and joints

  • Poor concentration & “brain fog”

  • Headaches

  • Digestive problems

  • Noise and/or light sensitivity

  • Alcohol intolerance

  • Sore throat

  • Tender glands

  • Poor circulation

  • Poor temperature control

  • Frequent ‘flu like symptoms

Diagnosis of ME/CFS

There are no specific laboratory tests. Diagnosis relies on careful clinical examination and listening to the patient’s history to enable the doctor to make a “diagnosis of exclusion”. This means that tests will be carried out to eliminate other conditions that produce similar bundles of symptoms. In ME/CFS it is quite common for blood tests results to be negative (i.e. not indicating any other illness). A diagnosis of ME/CFS is unlikely unless your symptoms have persisted for at least six months and that all the standard tests have been completed.

What Can Help Recovery? 

At present there is no cure and no particular therapy that will benefit everyone. However, an early diagnosis and adequate rest during the early acute stage of the illness or relapse appear to be particularly significant in achieving improvement.

Each person experiences the condition slightly differently and needs to develop his/her own approach to managing ME/CFS. It is generally accepted that the body needs energy to heal and so energy management is a key element of learning to live with the illness.  This involves careful pacing throughout the day, using appropriate aids where necessary and finding alternatives to energy-draining activities. It is particularly important to “listen to your body” and stop before you become fatigued. This avoids the “boom and bust” problem so often experienced by those with the illness.

Some people find certain complementary therapies (e.g. acupuncture, reflexology, kinesiology) helpful but the variable nature of the illness means that not everyone benefits from them to the same extent. Reviewing and changing certain aspects of your diet can also bring improvement to some symptoms.

The Right Balance…

Some treatments or rigid regimes may be harmful to the patient and so great care should be taken in assessing the potential impact of a particular treatment. As it is a fluctuating condition, the illness may improve despite, rather than because of, a particular treatment. Each person should seek to find a balance of physical and mental activity and rest that is right for them.

ME/CFS in Young People 

Children sometimes experience worse symptoms than adults but tend to recover more quickly. Inappropriate educational demands hinder recovery and so home tuition, part-time school attendance or distance learning may be more appropriate and helpful for recovery. In severe cases, education may need to be suspended until the child is well enough to resume a phased return to studies.

Specialist NHS
Support Services for ME/CFS in Derbyshire

The Southern Derbyshire CFS/ME Service is part of the Department of Rehabilitation at the Royal Derby Hospital. GPs may refer patients diagnosed with ME/CFS to the Service for more specialist guidance and treatment from the multi-disciplinary team based there. For those     living in the northern parts of Derbyshire, a similar service is available in Sheffield.