Living with M.E.
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M.E. and work

M.E. and work

M.E. can have a significant impact upon a person’s ability to work. For some, their symptoms are such they can’t consider working at all.

Others are able to stay in or return to employment, with the right sort of support in place. Managing fluctuations in M.E. symptoms, and working out what will help you to reliably sustain a job if you feel able to, can be challenging.

Communicating this, and negotiating what you need with an employer, may feel daunting. As a result, many people choose not to say anything or leave it to the employer to take the lead. It can be extremely helpful to take an active, positive approach to working out what you need and to communicating this to your employer, whether you are new or have worked for them for many years.

Useful resources:

  • Our M.E. and work booklet offers key information and signposting for people with M.E. who are in work, considering work in the future, actively seeking work now, or needing support to leave work now.
  • Our booklet, An employer’s guide to M.E., can help your manager and/or employer to better understand M.E. and support you more effectively.
  • Astriid's online Community for M.E./CFS offers peer support for people with M.E. around employment - please scroll down to read more.
  • Our Crisis, Advocacy and Support Service can offer one-to-one advocacy around issues relating to employment and supporting you to get your voice heard.


Support from your employer

Having a long-term fluctuating illness which adversely affects daily life is considered a disability under the Equality Act 2010. M.E. is named within this legislation as an example of fluctuating condition.

This piece of legislation aims to protect people who have a disability from discrimination (both direct and indirect) in the workplace.

It means that your employer should make “reasonable adjustments” to the workplace and to working practices, so that you (as a disabled employee or job applicant) are not at a disadvantage. Adjustments might include:

  • changes to the working environment
  • workload
  • flexible hours and time keeping
  • regular review meetings
  • support from an occupational health professional.

The earlier such adjustments are made, the easier it could be for you to mange work alongside your symptoms and the better your chances of staying in work. Advice and financial help may be available through the Access to Work programme.

Access to Work provides practical advice and financial support to help overcome the barriers to work experienced by people who have long term health problems.

The programme is flexible to try and meet the needs of the employee and their job.

Contact the Disability Employment Adviser at your local Jobcentre Plus office or go to Gov.uk for advice in England, Scotland or Wales or NI Direct for Northern Ireland.

If you have more complex disability needs, they may recommend the Work and Health Programme.


Disclosing your illness

Potential employers are not allowed to ask health-related questions, except in specific circumstances.

You don’t have to disclose a health problem or disability to your current employer, unless it could cause health and safety problems eg. if your M.E. causes cognitive problems affecting concentration, you may be putting your safety or someone else’s at risk.

You may be worried that disclosing your M.E. will put you at a disadvantage, or label or stigmatise you, or leave you vulnerable to workplace bullying. Or you may be concerned about how the information you will provide will be used.

If you tell your boss or employer about your illness, you can ask them to treat the information as confidential. The Data Protection Act says employers must ensure confidential and appropriate handling of ‘sensitive personal data,’ which includes information about a person’s health.

This means that if you tell your employer about your M.E., that information should not be shared with any other person, inside or outside the organisation, without your prior, expressed consent.

Some colleagues may need to know about any agreed adjustments to hours, work practices or environment. However, they do not need to know the precise medical reason why.


Astriid's community for M.E./CFS

Specialist employment support charity Astriid approached Action for M.E. over summer 2020, to see how we might work together to support people with M.E. who are well enough to work.

"When the charity was originally founded by my brother, we had an expectation that our focus would be on helping cancer survivors," says Steve Shutts (pictured), Astriid's CEO.

"However, it very quickly became apparent that there are so many other individuals who are suffering long-term health issues, from across a range of challenges, that it would not be right to focus exclusively on one condition. Since our launch in 2018 we have gone even further to now include the carers of people who manage health conditions and yet want the opportunity to get back to work."

Astriid operates by matching companies with potential employees who have skills and experience across a wide range of sectors, and who are also living with chronic illness or disability.

As well as offering this online platform for matching talented candidates with more flexible roles, Astriid is now turning its attention to developing communities for people with shared lived experience. It will begin this new venture with Astriid’s Community for M.E./CFS, which we are very pleased to support, launching with a free webinar, open to all, on Wednesday 9 September.

Steve says: "I am delighted that our first sub-community to be launched within Astriid will be the ME/CFS community, whose challenges to manage work alongside their condition can absolutely be helped by hearing from the first-hand experience of others. This goes to the heart of what we want our community to be about; helping and supporting others to build their confidence and capability to restore an important aspect of normality in their lives. Everyone deserves the opportunity to work, and to use their talents and expertise at this vitally important time for the country."