Today is Severe ME Day and this week (5th – 11th August) marks Severe ME Week 2024.
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, likely to be under-estimated due to many people being undiagnosed.
Up to 1 in 4 people with an ME diagnosis have Severe ME. Severe ME can be life-limiting and, in some cases, sadly is fatal. Long Covid is increasingly recognised as a post-viral condition with overlapping symptoms. The symptoms of ME are similar to those found in MS, and may also present in relapsing and remitting or progressive forms.
There is a need for this day because ME is often poorly understood, even by some medical professionals, and has long since attracted unfair stigma. It is a physical condition; not psychological. If an employee tells you they are living with Severe 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 about ME. 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 health conditions, employees with Severe 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 should be employee-led and handled sensitively.
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.
At Glass Ceilings® we work with businesses and employers to shape inclusive workplace cultures. We have particular expertise in conditions like ME and Long Covid in employment, across multiple industries and sectors.
If you are an employer that wants to support people living with chronic illness, including ME, get in touch to find out how we can help: [email protected]
8th August, 2024