Working with M.E./CFS

Some people, those with severe M.E., will not be able to work at all. Myalgic Encephalomyelitis or Encephalopathy (M.E.) is also diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).

M.E. is defined as a neurological illness by the World Health Organisation.

It is thought that around 250,000 men, women and children in the UK have M.E., although it is most common in women aged 25-50. There is a strong possibility that someone you know is affected by the illness. If you work in a large organisation, 1 in 250 people are likely to have M.E. or be affected directly as a carer.

Symptoms can include persistent exhaustion (‘fatigue’), pain, sleep disturbance,

‘flu-like symptoms such as headache, sore throat, painful lymph nodes,

dizziness and/or nausea and problems with memory and concentration.

NHS guidelines say the symptoms of M.E. can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis or congestive heart failure. However, levels of severity vary from mild and functioning to movements being restricted to the house or bed.

The fluctuating nature of M.E. can make it difficult for someone with the illness to maintain a consistent level of working. A task that is easily manageable one day may prove impossible the next.

Working with M.E./CFS
Those with mild to moderate M.E. may be able to work part-time or even full time as they move into recovery. Returning to work after a period of illness with M.E. requires a much more gradual approach than most other phased returns. A return to previous hours within eight weeks, as happens with some other illnesses, is unlikely. When Action for M.E.  asked people with M.E. who were in employment what adjustments they would find most helpful, 42% said working from home, 37% said flexible hours, 33% said having access to a quiet place to rest and 32% said an understanding attitude amongst colleagues.

Factsheet: M.E. in the workplace

Booklets: M.E. and work (for people with M.E.)

and An employer's guide to M.E.

 Online resources: Employment and M.E.