Myalgic Encephalomyelitis (M.E) is a chronic, fluctuating, neurological illness which affects a number of bodily systems, including the nervous and immune systems.
In many countries it is also known as Chronic Fatigue Syndrome (CFS). The abbreviation ME/CFS is often used to refer to the illness.
In a number of cases the trigger for onset of ME/CFS may be a viral infection, this can lead to a diagnosis of Post Viral Fatigue Syndrome (PVFS).
At KCIMESG we recognise all of these terminologies equally and welcome anyone diagnosed with M.E, CFS, ME/CFS, or PVFS.
ME/CFS is more than being tired. It is a seriously debilitating illness which causes profound fatigue and energy impairment. Over the years the illness has been stigmatised and minimised and this is something that KCIMESG works hard to dispel.
It is a biophysical illness and has been recognised as a neurological disease by the World Health Organisation since 1969. There have been efforts by some parts of the medical establishment to position ME/CFS as a psychological illness, but these theories have been repeatedly debunked.
A 2015 study in Denmark found that people with ME/CFS have a lower quality of life score than most other chronic illnesses, including cancers, chronic renal failure, and multiple sclerosis.
It is very important to seek medical help and pursue a diagnosis if you think that you may be suffering from ME/CFS. You can find out more about symptoms and diagnosis here.
People with ME/CFS vary widely in their experience of the illness. Some experience a sudden onset, others a gradual onset. Symptoms can fluctuate over time and people may move between mild and severe phases. Click here to find out more.
There are no recognised cures or treatments. Recovery is rare (estimated at less than 5% of cases), although there are ways to try and manage the illness which enables some people to stabilise their symptoms. We have some information on this here. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) have previously been promoted as treatments for ME/CFS but recommendations for these have been withdrawn. It is very important if you have ME/CFS or suspect that you may that you do not attempt any form of Graded Exercise.
It has previously been estimated the 250,000 people in the UK suffer from ME/CFS, however the true number is likely to be higher due to undiagnosed cases, lack of recording in the healthcare systems, and more recently the emergence of Long Covid. You can find out more about the relationship between ME/CFS and Long Covid here..