Question

There is conflicting information about what happens to people with ME. My GP thinks most people get better – although it may take a couple of years! But if you look at internet discussion groups most people believe that while some people will improve nobody ever returns to full normal health. What is the truth?

Answer

Unfortunately, there has been very little in the way of good quality research looking into what happens to people with ME/CFS over a long period of time (although the ME/CFS Biobank will be reporting results of an eight-year study in spring 2024). The best I can do for now is to combine the results from the research that has taken place along with the views of doctors who have good clinical experience of seeing people with ME/CFS.

Based on this I have come to the following conclusions:

• Prognosis in ME/CFS is very variable.
• Prognosis appears to be better in children and adolescents, with some going on to make a full recovery.
• Most people will make some degree of improvement over time with the majority of any improvement often occurring early on.
• Good activity management, especially early in the illness, probably plays an important role with any improvement.
• Improvement often fluctuates with periods of remission and relapse.
• In adults, a full and sustained return to previous levels of health and functioning is unusual.
• Most people will stabilise at a lower level of functioning than occurred before their diagnosis.
• Those who have been ill for several years as less likely to recover. Recovery after symptoms have persisted for five or more years, even with good management, is unusual.

It is estimated that around 25% of people will be severely affected – being housebound or bedbound and needing to use a wheelchair – at some stage in their illness. As it is generally regarded as a fluctuating medical condition, people can experience severe forms of ME/CFS more than once during the course of their illness. Lack of good management during the very early stages is an important factor.

• Deterioration in symptoms can occur, especially in people with more severe ME/CFS.
• Progressive deterioration should always prompt a detailed clinical review.

More information

• The ME/CFS Biobank: A longitudinal immunological and virological study for ME/CFS biomarker discovery | See Active Projects.
• 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 Free Literature:
  • 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.
  • 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.
  • 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.