ME (myalgic encephalomyelitis) is a condition that affects roughly 250, 000 people in the UK and is shrouded in a lack of understanding to a great degree. To begin with, there is some dispute as to the correct name to give the condition. It is also known as ‘chronic fatigue syndrome’ (CFS) because the main symptom for many is often fatigue and the condition is chronic. However, fatigue is not always the main symptom (others include muscle pain, problems with short-term memory and concentration, sleep disturbances and emotional imbalances). To further complicate matters, the causes of the condition are unknown – though it has been suggested that a viral infection can trigger it – and there are no tests available to definitively diagnose the illness.
One thing that is clear, however, is that the condition can be extremely debilitating. The symptoms can range from relatively mild, to extremely severe. Somebody with mild symptoms may need the odd day off to rest when the fatigue is bad. Those with severe symptoms, however, may have reduced mobility and can sometimes only carry out the very simplest of everyday tasks. Unfortunately for those affected, despite having been recognised as a neurological condition by the World Health Organization since 1969, it’s believed by many to be a ‘made up’ condition, partly because the condition fluctuates, and partly because the symptoms can vary so greatly and can’t be categorised as clear-cut ME symptoms.
Because ME is a long-term and fluctuating condition, those affected may be protected from discrimination under the Equality Act 2010 if the illness has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities (and those who have been off work for four weeks or more due to their condition can be referred for a free Fit for Work occupational health assessment). If an employee meets the requirements of the Act, employers need to ensure that they do not treat that employee any less favourably than any other employee.
The Action for ME website has a number of resources on how to manage ME, as well as how employers can manage and support those with the illness. Further useful information on work, occupational health and ME can also be found in this leaflet.
Many people with ME find that pacing helps them manage their illness. Pacing is learning to successfully manage activity and rest, and usually involves taking short breaks throughout the day. Other therapies that may help are cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
Those returning to work after a period of time off should consult an occupational health professional, who may be able to help with organising a phased return or adjustments at work. If you have been off work for longer than four weeks, you can ask your employer to refer you to Fit for Work for a free occupational health assessment. GPs can refer sooner than four weeks if they think you are likely to be off sick for four weeks or more.
Employers can refer their staff members to Fit for Work by visiting fitforwork.org/employer and clicking on ‘refer an employee’. GPs can visit fitforwork.org/general-practitioner and click on ‘refer a patient’. For more information on referrals, see this post.
Information about organisations’ responsibilities under the Equality Act 2010, as well as on a vast array of other work health-related topics, can be found on the Fit for Work AAdvice Hub. You can also call 0800 032 0635 (English) or 0800 032 0633 (Cymraeg) to speak to a dedicated advisor.
Those in Scotland can visit fitforworkscotland.scot or phone 0800 019 2211.