Although ME/CFS sufferers may outwardly appear well they are in fact affected by a seriously disabling disease which is still poorly understood and often diagnosed incorrectly.

ME manifests itself within the central nervous system (CNS), autonomic nervous system (ANS), immune system, cardiovascular system, endocrine system, digestive system, and musculoskeletal system.

The main symptom of CFS/ME is feeling extremely tired and generally unwell. In addition, people with CFS/ME may have other symptoms, including:

  • General malaise
  • Sleep problems
  • Mobility problems
  • Muscle and/or joint pain
  • Headaches
  • Brain fog associated with problems thinking and difficulties in remembering, grasping and processing new information and concentration.
  • Chronic sore throat
  • Recurrent swollen and sore cervical lymph nodes
  • Flu like symptoms
  • Dizziness
  • Nausea
  • Blood circulatory disturbances known as Postural Orthostatic Tachycardia Syndrome (POTS)
  • Fast or irregular heartbeat (palpitations)
  • Food allergy/intolerance or environmental sensitivity

Typically, patients find that stress, mental or physical overexertion are associated with Post Exertional Malaise (PEM) – worsening of the person’s own cluster of symptoms. PEM occurs when the patient engages in any basic activity which a well person would do without thinking, the ME patient might appear to the outside world as coping, but then suffers an involuntary reaction as a result leaving them no choice but to retreat to their bed for days, weeks or even years depending on the patient’s level of severity. 

In 1969 WHO classified ME as a neurological illness.

According to the Institute of Medicine (IOM), a diagnosis of ME can be made if a person experiences fatigue extreme enough to: impair normal activity for at least six months; develop more severe symptoms after exertion; feel little relief from sleep; and suffer either cognitive changes or difficulty sitting or standing upright.

The severity of symptoms may vary from day to day and from person to person. 

25% of ME patients are so disabled they’re housebound or bedbound with severe ME and many of them have been like that for decades. Some need 24-hour care and occasionally tube feeding is required. The symptoms of ME/CFS can be equalled to those of other similar illnesses but only a diagnosis of exclusion is medically available at the moment.

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.

We hope you understand that we can’t respond to individual questions or concerns about ME/CFS. If you need further information or support, please contact…

The main National Charities:

ME Association:

Telephone: 01280 818963 weekdays, between 9.30am and 3.00pm.

https://meassociation.org.uk

Address: The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks, MK18 4DF

Action for ME:

Telephone: 0117 927 9551 (10am to 5pm Monday to Friday)

https://www.actionforme.org.uk

Action for ME, 42 Temple Street, Keynsham, BS31 1EH