This booklet covers information on what people may expect following a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life.
It is based on extensive evidence from people with ME/CFS, their partners or family members, a small number of research studies, and clinical opinion from doctors who are involved in the management of ME/CFS.
Introduction
Prognosis: what are the chances of improving or recovering from me/cfs?
Prognosis is a forecast, based on patient and clinical experience, and research evidence, of the likely course of a medical condition. However, it is difficult to predict individual outcomes in a condition like ME/CFS that affects different people in different ways.
Overall, and taking into account the fluctuating nature of ME/CFS, most people with ME/CFS fall into one or more of the descriptions set out on the following page.
Please note that some people follow a more complicated course and do not fit neatly into any one of these six basic descriptions. For example, some people make a significant degree of improvement, have a relapse, but then only make a partial improvement. And some people who return to normal health, or almost normal health, then find that their ME/CFS recurs after an infection.
- Recovery: This refers to a return to full and sustained normal health, or near normal health. Unfortunately, the percentage of adults who make a full recovery from ME/CFS appears to be only around 5% and probably no more than 10%. In some cases, where recovery has occurred in less than a year from symptom onset, a more appropriate diagnosis may have been a self-limiting post-viral fatigue syndrome. The situation for children and young people is generally considered to be significantly better than for adults (references: Bell and Rowe)
- Significant improvement: A gradual overall improvement in functional ability and symptom severity, which tends to occur within the first few years. This group often then reach a ‘glass ceiling’ from which there is no further improvement. For others, the process may take much longer
- Partial improvement: Some degree of improvement, which again is followed by stabilisation but at a much lower level of physical and mental capability compared to before the development of ME/CFS
- No improvement: A failure to make any improvement following the acute or post-infectious phase of their illness.
- Severe and very severe ME/CFS: Estimated to affect around 25% of people at some point in their illness. Some people are severely affected at the onset of their illness. In others this follows a slower deterioration in health.
- Progressive deterioration: Although a progressive deterioration is not the norm this does sometimes happen. Where any form of progressive deterioration occurs, a detailed medical re-assessment is essential to rule out other possible causes, especially conditions like hypothyroidism, that can cause ME/ CFS-like symptoms.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
