What is ME/CFS?

Myalgic Encephalomyelitis (ME) is a chronic illness which can be diagnosed under many names. Within the NHS it is commonly

called Chronic Fatigue Syndrome (CFS or ME/CFS). Sometimes it is known as Myalgic Encephalopathy or diagnosed as Post Viral Fatigue Syndrome (PVFS).

ME affects an estimated 404,000 people in the UK and can affect anyone, including children, but is most commonly diagnosed in women aged mid 20s - mid 40s. Although the cause of ME isn't currently known, diagnosis often follows a viral or bacterial infection (such as glandular fever or pneumonia), immune system problems or hormone imbalances.

The recent DecodeME study found significant genetic differences in people with ME/CFS compared to the general population. Specifically, they identified eight regions of the genome where genetic markers are more common in people with ME/CFS, suggesting a genetic component to the illness. These findings offer the first robust evidence that genes contribute to the development of ME/CFS and indicate that both the immune and nervous systems are involved.

Depending on the severity of an individuals condition, ME can display as an invisible illness or can lead to somebody becoming bed bound, and everything in between. However severe, it usually has a big impact on day-to-day life which can often be hard to communicate to other people.

ME also often comes hand in hand with other conditions such as Postural Orthostatic Tachycardia Syndrome (PoTS) or Fibromyalgia.

People with M.E. experience severe, persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to

recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is also characterised by a range of additional symptoms that may fluctuate or be intermittent and include:

- Fatigue and malaise following mental or

physical activity

- Intolerance to exercise, joint pain, muscle pain

- Flu-like symptoms

- Memory, concentration or attention problems

- Clumsiness, walking difficulties

- Sore throats, enlarged glands

- Temperature control problems

- Sleep disturbance

- Bowel problems

- Anxiety and depression

As the NICE Clinical Guideline says: “The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions”, and it identifies the following levels of severity:

Mild - Where people “are mobile, can care for themselves and can do light domestic tasks without difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.”

Moderate - where people, “have reduced mobility and are restricted in all activities of daily living,

although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.”

Severe - where people, “are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed.

There is much debate about its underlying cause, treatments and what does/doesn’t work and at the time of writing there is still no drug therapy directed specifically at M.E. Current theories about the cause of M.E. include autoimmune deficiencies, viral infections, autonomic/ sympathetic/central nervous system dysfunction and genetic factors, amongst others.

Some people do recover from M.E., often partially and in some cases fully. There isn’t yet clear evidence about who is likely to recover or why. People who have recovered give different reasons, though common themes are:

- stepping back from their busy pre-M.E. lives and taking actions, including resting, to stabilise their condition

- listening to their bodies

- understanding their major symptom triggers

- being resilient to set-backs

- finding patience to take very gradual steps towards recovery when able to do so.

Everyone’s experience of M.E. is individual. Even the basic pattern of the illness varies, with some experiencing a sudden onset of symptoms following an infection or accident while others develop the condition gradually over several years. Some people’s condition is relatively constant while others experience cycles of remittance and relapse. There is growing evidence from experts in the field of M.E. that a number of sub-groups exist within M.E. This most probably explains why people with M.E. differ in terms of their illness experience and the course their illness follows