A completely updated and comprehensive guide to everything you need to know about employment and ME/CFS. It includes information about sickness absence, leaving work due to ill health, termination of employment, unfair dismissal, national insurance, benefits, pensions, early retirement, reasonable adjustments, and returning or continuing to work as a disabled person.
Work has many benefits and not just as a means of income. For those lucky enough, it can be more than just a job; it can help you feel valued and provide purpose and responsibility. It can be a career and even a vocation. It’s where you can make friends. It can assume such importance that it becomes part of your identity. Work can stimulate and be satisfying, but it can also be difficult, stressful, mundane, soul-destroying, and lack direction.
For most people, work is something that is a necessary part of adult life whose main purpose is to provide an income that helps pay the bills and provide them and their family with a place to live.
Having to leave a job suddenly because of a medical crisis without any idea when you might return, can cause significant anxiety and stress. It not only leads to rational concerns about financial security, but it can lower self-esteem, cause a loss in confidence, a loss of identity, and result in the loss of a social network.
Returning to work after a long period of sickness absence can also present a challenge and might best be achieved on a phased-return, part-time – even voluntary basis – until such time as you know you can handle its demands and don’t experience setbacks in health.
We hope the information in this booklet will provide a measure of reassurance and let you see how you can survive when ill-health leads to work absences, a loss of employment, or early retirement, and that it can be used to help support those who are in a position to return to the workplace.
While we have tried to make the explanations as easy to understand as we can, many involve detail that might best be read and understood by someone who does not have ME/CFS. We suggest that you try and read the booklet if able, but ask a family member, close friend, or carer to help you to better understand the content where necessary.
B. THE EARLY STAGES OF ME/CFS
Most people with ME/CFS develop the illness following an acute infection (although there are other known triggers). At this point they are usually so unwell that they are unable to work and must take a period of sick leave. Sometimes the illness will allow them to keep working although they might need to reduce hours or rearrange their lives to allow time to rest in the evenings and at weekends. But the majority will experience moderate to severe ME/CFS at some point, and this is more likely to render them unable to work.
Despite the 2021 NICE Clinical Guideline that recommends diagnosis occurs within 3-months of symptom onset, it may take longer in practice before a diagnosis of ME/CFS is given. As a result, referrals to NHS ME/CFS Specialist Services can be delayed and you might not receive the best advice about how to manage your condition in a timely fashion.
A lack of early intervention could mean that you try to stay in work or return to full-time or even part-time work feeling very unwell – when you should be having a good period of convalescence and learning all you can about how you can best manage, accept, adapt, and accommodate ME/CFS. If bad advice or a lack of good advice is then followed by a series of erratic attempts at working, and more sick leave, anecdotal evidence indicates that this can significantly increase the risk of ME/CFS becoming more severe and persistent.
Returning to work prematurely and without any accommodations in place, can also increase the risk of relapse. Of course, we recognise that there is often a pressing need
to return to work and you might go beyond what is otherwise sensible to ‘return to normal’ or ensure your job remains available. This can happen when you don’t receive appropriate medical advice or because you consider working and receiving an income to be a greater priority than taking good care of yourself.
Sometimes it can be because you simply want to test your abilities or because an employer has made ‘reasonable adjustments’ (see below) to a role to try and accommodate your disability, or alternatively because a demanding employer is making life unreasonably difficult, and you feel you need to return to keep your job.
During this early period of ME/CFS we suggest that:
- you keep in touch with your GP and discuss the recommendations from The 2021 NICE Clinical Guideline on ME/CFS,
- you obtain good, personalised management advice from an NHS ME/CFS Specialist Service – based on the 2021 NICE Guideline recommendations – relating to activity management and symptom relief, and,
- you avoid trying to return to work if you are clearly not well enough to do so.
It is important to keep in touch with your line manager, human resources, and any occupational health (OH) department. If you belong to a union or professional body, then keep paying subscriptions if you can – you may well need their help later. If you find that you need to produce a medical report and there is no OH department at work, you could make an appointment with an OH physician who writes private reports. Make a careful note of any meetings you attend with your employer or HR
department – especially any actions that are agreed.
A good employer will want to make regular enquiries about an employee who is on a prolonged period of sick leave, and this may involve arranging for someone to come and see you at home. While this can add pressure to an already difficult situation, it is important that you or your representative tries to keep your employer appraised of the situation, even if you are only able to say that there’s been no change since the last time you spoke.