information for patients

What is ME/CFS ?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex, multi-sytem, chronic medical condition characterised by persistent fatigue that can significantly affect everyday life and doesn’t go away with sleep or rest. Unlike everyday tiredness it can be triggered by minimal physical, cognitive or emotional activity. ME/CFS is recognised as a relatively common illness (NICE, 2007) and classed as a neurological illness by the World Health Organisation (WHO, 2010). Current research indicates dysregulation of several different body systems. Sadly it can be common for patients to struggle to obtain recognition and understanding for the way that they feel, not only from health professionals, but also from family and friends.

who is affected?

Common belief suggests a UK population prevalence of 250,000 with ME/CFS, and around 17 million people worldwide; the female-to-male ratio being 3:1. ME/CFS can affect many different body systems therefore presenting with many different symptoms, and can have a significant negative impact on a person’s quality of life.

ME/CFS can affect adults, adolescents and children.

what causes me/cfs?

It is not known exactly what causes ME/CFS. Various suggestions have been made based on the evidence we have to date, including:

  • a viral infection
  • ongoing demands
  • significant negative life event, such as a bereavement, stress or trauma

More research is needed to confirm exactly what causes the condition.

ME/CFS symptoms

ME/CFS is a complex condition which can be experienced as mild, moderate or severe, people can have a                                               wide range of symptoms which may vary in intensity and severity, some of which are listed below:                                                                 

Fatigue
Impaired memory /concentration
Word loss
Muscle aches
Joint pains
New headaches
Sore throat
Tender lymph nodes
Post exertional malaise/fatigue
Flu like symptoms
IBS symptoms
Nausea
Altered balance
Dizziness
Difficulties with spatial awareness
Clumsiness
Altered mood
Hypersensitivity to sound and/or light
Difficulty regulating temperature
Cold hands and/or feet
Sleep disturbance
Difficulty making decisions
Tired after eating
Disturbed vision

How is ME/CFS diagnosed?

A diagnosis should be made after other possible conditions have been excluded and the symptoms have persisted for four months in an adult. At the very least a doctor would have conducted numerous blood tests to rule out other illnesses and conditions that can cause fatigue.

There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of ME/CFS. NICE says that a diagnosis of ME/CFS should be considered if you meet specific criteria regarding your fatigue, for example, it can’t be explained by other conditions and if you have other symptoms too, such as sleeping problems or problems thinking and concentrating.

M.E

treatment: tHe ASSIST rehabilitation programme

A

SSESS

Assessing your current symptoms, activity tolerance and associated challenges

S

TABILISE

Stabilising your condition before progress can begin

S

TART TO PLAN

Individualising a rehabilitation programme for you to follow

I

NCREASE                            TOLERANCE

Increasing your activities and your tolerance to them

S

UPPORT                       EMPLOYMENT &          EDUCATION

Supporting you through employment and education issues

T

REATMENT       CONTINUATION

Reviewing your progress and enabling your improvement to continue

USEFUL Links

Action for M.E.     0117 927 9551                                                                 British Association for CFS/ME   08451 232389                                      Central Lancs ME/CFS Support Group  01772 751254                               M.E. Association 0844 576 5326