Illness Severity Definitions
The main purpose of the disability rating scale is to help people with ME/CFS provide a short description as to how their symptoms and ill health are impacting on all aspects of everyday living – especially restrictions on mobility and personal care needs.
We have included six categories within the rating scale based on illness severities, and 10 descriptors as percentages which help to explain the degree of symptom severity and the impact on functional abilities.
This is not a symptom or ill-health rating questionnaire – although the type and severity of symptoms, and their impact on daily life, obviously forms the basis to how the 10 different descriptors are framed.
Definitions of severity are not clear-cut because individual symptoms often vary in severity throughout the day, from day to day, and from week to week. So it’s unlikely that every part of a single disability descriptor is going to be applicable all the time. You may therefore find that your disability levels fluctuate between two or three of these descriptors.
As the 10 descriptors are concentrating on disability rather than symptoms and ill-health, they are covering practical tasks like standing, walking, washing, food preparation and eating. This is because these are the kind of everyday tasks that are asked about when disability levels are being assessed for DWP benefits, etc.
In addition to assisting with applications for DWP benefits – PIP in particular – this information can be used when applying for disability aids and appliances, Blue Badge and bus pass applications, the provision of social care, and the ability to undertake employment or education.
As many of the key symptoms of Long Covid – i.e. debilitating fatigue, cognitive dysfunction/brain fog, dysautonomia, unrefreshing sleep – are also diagnostic features of ME/CFS, and some people with Long Covid meet diagnostic criteria for ME/CFS, this disability rating scale will also be helpful for some people with Long Covid.
It can also be used to monitor changes in the level of your disability over time.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
