Living with M.E.
A A A Text size

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.


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.


Our SEE M.E. project

People who have M.E. tell us that they, their employer and the people supporting them need more information about how to effectively manage M.E. at work.

Support, Empower and Employ people with M.E. (SEE M.E.) was an innovative pilot project that transformed employment outcomes for people with M.E. in the South West. By responding directly to the needs of people with M.E., and those that support them, SEE M.E. provided crucial tailored and expert support, empowering people with M.E. to stay in work, return to work or leave work well.

We delivered SEE M.E. in partnership with the specialist M.E. clinic at North Bristol NHS Foundation Trust, Action on Disability and Work UK, Jobcentre Plus, Remploy and Pluss (an award-winning social enterprise). The project was funded by SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust.

The project employed specialist employment support staff with experience of M.E, embedding them within the specialist Bristol NHS M.E. clinic, where more they worked with more than 120 people with M.E. over 12 months between 2015 and 2016.

Independent evaluation of the project found that 72% of SEE M.E. clients achieved their employment goal, including:

  • successfully returning to their job after lengthy sickness absence
  • starting a new job
  • achieving their best possible exit from unsustainable employment
  • achieving more sustainable existing employment
  • starting volunteering or a training course.

The project also demonstrated significant value for employers and clinicians.

  • 60% of clinicians said SEE M.E. freed up clinical time previously spent supporting patients with their employment needs. This time saving of saving of two hours per week equates to £24,000 per annum.
  • 83% employers or union representatives said SEE M.E. made a positive difference to their anticipated case outcome.