This week is Severe ME Awareness Week. ME, short for Myalgic Encephalomyelitis, is a debilitating, complex, chronic neurological condition affecting multiple body systems, for which there is no known cure. The ME Association estimates that at least a quarter of a million people in the UK have ME. This is likely to be under-estimated due to many people being un- or misdiagnosed.
Unfortunately, ME is often poorly understood, even by some medical professionals, and has long since attracted unfair stigma. ME is a physical condition; not psychological. It is also far more complex and disabling than “chronic fatigue” which is why the term ‘Chronic Fatigue Syndrome is wholly inadequate and should never be used.
ME ranges in severity from mild to very severe. Mild-moderate ME is life-altering; whilst Severe ME, which is the focus of this awareness week, is life-limiting and can, in some cases, be fatal. Long Covid is increasingly recognised as a post-viral condition with overlapping symptoms. The symptoms of ME present as similar to those found in MS, without lesions in the brain and spinal cord, and may also present in either relapsing and remitting or progressive forms.
If an employee tells you they are living with ME, ask them how they are affected and what would help them to recover from any relapse and remain in employment. Ensure that any advice you take is from well informed specialists, free from bias or misinformation. Ensure your policies and procedures on disabilities and attendance are kept up to date and avoid unfair treatment.
The ability to work flexibly with reasonable adjustments is crucial to helping people with Severe ME to remain in good employment for as long as possible, or to return to work when they recover from relapse. As with other serious chronic health conditions, employees with ME should be supported when they require time off for treatment and recovery. They may need to reduce their hours on a temporary or permanent basis. If their condition progresses without adequate interventions then, like other life-limiting illnesses, there may come a time when they need to leave work altogether. This process should be employee-led and handled sensitively. Seek specialist HR and employment law advice in these circumstances.
In some industries, there are legitimate health and safety considerations around symptoms like fatigue. It’s important for employers in those industries not to discriminate against people with ME on the grounds of their disability. A risk assessment and open dialogue with the employee will help.
Glass Ceilings Change Management has particular expertise in conditions like ME and Long Covid in employment, working across multiple industries and sectors.
We also work 1:1 with individuals preparing to return to the workplace following a period of ill health or disability-related absences, or coming to terms with a diagnosis.
Get in touch if you or your organisation requires any support.
4th August, 2025