If you have ME or care for someone who has ME, you may be entitled to claim welfare benefits.
Our resources (see below) share detailed information about the application, assessment and appeal process for Personal Independence Payments (PIP) and Employment and Support Allowance (ESA), specifically in relation to ME, and signpost to other sources of advice and representation where possible.
With the right support, some people with ME can continue or return to work. For others, their symptoms are such they can’t consider working at all.
Understanding your rights, and communicating your needs may feel daunting, so we have produced resources below to help with this.
For more information about your employment rights and support at work in England, Wales and Scotland, contact the Advisory, Conciliation and Arbitration Service. The Labour Relations Agency provides services for employment relations and practices in Northern Ireland.
Citizens Advice offers confidential advice online over the phone and in person, for free, as a national charity and network of local charities, on a huge range of issues including welfare benefits and your rights at work.
Turn2Us offers a welfare benefits calculator and information about grants you might be able to apply for. Disability Rights UK offers helplines specifically for disabled students and for support with personal budgets.
Law Centres defend the legal rights of people who cannot afford a lawyer, and some offer free support to appeal PIP decisions.
Having a long-term fluctuating illness which adversely affects daily life is considered a disability under the Equality Act 2010. This piece of legislation aims to protect people who have a disability from discrimination (both direct and indirect).
ME is named within this legislation as an example of a fluctuating condition and means your employer should make "reasonable adjustments" to the workplace and to working practices so that you are not at a disadvantage.
Adjustments might include:
The earlier such adjustments are made, the easier it could be for you to manage work alongside your symptoms.
You don’t have to disclose a health problem or disability to your current employer, unless it could cause health and safety problems e.g. if your ME causes cognitive problems affecting concentration, you may be putting your safety, or someone else's, at risk.
Potential employers are not allowed to ask health-related questions, except in specific circumstances.
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 ME, 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.
