Myalgic Encephalomyelitis (M.E.) Overview

M.E. (myalgic encephalomyelitis), also known as chronic fatigue syndrome, is a long-term condition characterised by extreme tiredness, among other symptoms. M.E. is not fully understood, but it is thought to be caused by phenomena as wide-ranging as hormonal imbalances, immune system issues, a viral or bacterial infection, or stress. It is estimated that one in every 250 people in the UK has M.E. to some degree.

What are the signs and symptoms of M.E.?

M.E. is characterised by extreme tiredness, but it can also cause the person with the condition to feel generally unwell, including the following symptoms:

  • Muscle and joint pain
  • Poor sleep
  • Memory and attention difficulties
  • Sore throat
  • Flu-like symptoms
  • Dizziness
  • Nausea
  • Heart palpitations

How is M.E. diagnosed and treated?

M.E. is difficult to diagnose because there is no conclusive test and symptoms are similar to those of other conditions. For example, joint pain could be symptomatic of arthritis and not M.E.. Blood tests may help rule out anaemia and liver and kidney issues which may share symptoms with M.E..

The criteria for diagnosis typically include:

  • Fatigue which worsens after light exercise
  • Recurrent fatigue which is either a new phenomenon or which has lasted a long time
  • At least one of the following symptoms in addition to tiredness: Sleeping problems; joint pain; headaches; sore throat; dizziness; nausea; an irregular heartbeat.

Treatment for M.E. could involve cognitive behavioural therapy (CBT) to deal with the psychological impact of the illness, such as the isolation resulting from spending increased time in bed and less time out and about working or socialising. 

They will typically prescribe a combination of lifestyle changes and pain relief medication, although there is no one-size-fits-all approach and symptoms may fluctuate over a lifetime.

Most people do completely recover, particularly those diagnosed at a young age.

There are a few ways to confirm what sort of reasonable adjustments should be made for an employee with M.E.:

An employee may not disclose their M.E. upfront, but if they do, questions regarding the nature of an employee’s M.E. and what extra support they may need can be broached sensitively. For example:

  • Have they required adjustments in the past? For example, avoiding certain types of energetic tasks which might exacerbate their symptoms.
  • Encouraging the employee to express their strengths and interests and which tasks they might enjoy doing is a positive way of adapting to their needs and empowering them, in spite of their M.E.
  • Even if the employee does not wish to disclose their M.E. – or they have not even received a precise diagnosis – an employer can focus on making reasonable adjustments, rather than seeking to determine the precise disability their employee has.

What reasonable adjustments are possible for employees with M.E.?

Employers have a legal duty to make reasonable adjustments for employees with M.E. if they know, are aware of, or could ‘reasonably be expected to know’ that the employee has M.E.. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance upfront, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of M.E.:

  • Flexible working hours to accommodate medical appointments and periods of increased absence or decreased productivity following a flare-up in symptoms.
  • Additional breaks if the person’s medication causes their concentration to lapse or makes them drowsy shortly following taking it.
  • Adjustments to duties depending on the severity of their symptoms, which may be variable and improve or deteriorate from one week to the next. This may also be dependent on when they take their medication if they are required to operate machinery, for example.
  • Raising awareness so that colleagues understand the employee’s M.E. and can help ensure the employee feels comfortable at work, for example, when taking additional breaks.
  • Sensory adjustment in the working environment to help with light and noise sensitivity and the adverse effects a bright and/or loud environment may have on symptoms.

M.E. Signposting

M.E. Research – charity that commissions and funds biomedical research into the causes, consequences and treatments of M.E., as well as provides information for a wide audience on all aspects of the condition (01738 451234).

M.E. Association – charity providing information, support and advice for people affected by M.E. It also works with parliamentary committees and health authorities to help shape policy which can improve the lives of people with the condition (03445765326).

Action for M.E. – charity leading the world’s largest programme for genetic research into M.E. and advocating for people with the condition (0117 927 9551).

Other Research Resources

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