How does the government define a disability? Does the government classify ME/CFS as a disability? I ask because I assume that this could have important implications for people who are having problems with benefits, education or work.
The best way to answer this question is to refer to the 2010 Equality Act – where ME/CFS is listed as a specific medical condition. But this does not mean that everyone with ME/ CFS – regardless of the severity – is automatically classified as having a disability. A person has a disability for the purposes of the Equality Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.
Example from the guidance:
“A man has had chronic fatigue syndrome for several years. Although he has the physical capability to walk and to stand, he finds these very difficult to sustain for any length of time because he experiences overwhelming fatigue. As a consequence, he is restricted in his ability to take part in normal day-to-day activities such as travelling, so he avoids going out socially, and works from home several days a week. Therefore there is a substantial adverse effect on normal day-to-day activities. Day-to-day activities are things people do on a regular or daily basis. Examples include shopping, reading and writing, having a conversation or using the telephone, watching television, getting washed and dressed, preparing and eating food, carrying out household tasks, walking and travelling by various forms of transport, and taking part in social activities.”
The Equality Act Guidance from the Office for Disability Issues (2011) covers each component of the definition – impairment, substantial, day-to-day activities, long term – in more detail. Guidance and illustrative examples are also provided where relevant.
The general definition of disability therefore has four key components:
- The definition requires that the disability must arise from a physical and/or mental impairment. As far as ME/CFS is concerned, section A5 in the Guidance to the Act makes it clear that ME/CFS is a fluctuating medical condition that can cause substantial impairment.
- Almost all of the diagnostic criteria for ME/CFS also make it clear that the symptoms must cause a significant impairment in relation to a person’s ability to carry out their normal daily activities (at home, work, school etc).
- The requirement that an adverse effect on normal daily activities should be a substantial one reflects the general understanding of disability as a limitation going well beyond the normal differences in ability which may exist among people. A substantial effect is one that is more than a minor or trivial effect. Normal day-to-day activities can include general work-related activities, and study and education-related activities, such as interacting with colleagues, following instructions, using a computer, driving, carrying out interviews, preparing written documents, and keeping to a timetable or a shift pattern.
- Having a long-term effect of the impairment is defined as:
- Lasting at least 12 months, or
- From the onset it is likely to last 12 months or more, or
- Likely (i.e., may well) last for the rest of the person’s life.
- The 2021 NICE Guideline for ME/CFS: An ME Association Summary. This booklet is available as a free download and is recommended reading. It lets you know what to expect from the NHS and social care services with regard to symptom recognition, diagnosis, management, referral, and ongoing care and support.
- We have also produced detailed information booklets which can be downloaded from the website shop:
- Examining illness severity, explaining how ME/CFS is officially recognised as a neurological disease and disability, and providing a useful disability rating scale that can help you explain your disability to others.
- Considering disability aids and home adaptations – the NICE guideline recommendations, NHS and social care provision, the disabled facilities grant – and providing helpful tips to help you achieve more independence.
- Asking what you might expect from a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life, based on research evidence and expert medical opinion.
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.