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ME Association Research Review: Mortality in ME/CFS


In May 2023, the ME Association requested the latest mortality data from the Office for National Statistics (ONS) and discovered that between 2001 and 2021,150 deaths in England and Wales were partly or fully attributable to ME/CFS.

It’s a sobering topic, but it is important that we review and consider the latest data and consider what might be the leading causes of death for people with this long-term disability. ME/CFS is rarely cited when compared to other causes of death in the UK. However, some aspects of ME/CFS can potentially make it become a life shortening illness.

ONS data has revealed that 88 deaths between 2001 and 2016, and 62 deaths between 2017 and 2021, were partly or fully attributable to ME/CFS. This is a significant increase in the rate of deaths (an increase from 5.5 deaths per year to 12.4 deaths per year) in the 2 respective periods. Across the 20 year period, there were 7.5 deaths per year on average.

We don’t have any evidence that the mortality rate – the number of people dying from ME/CFS per year – has increased between the time periods, but the data may well reflect a greater awareness of ME/CFS in recent years and of its potentially life-threatening complications. However, there is a need for better data before we can reach any firm conclusions.

“The current MEA position is that there is no sound evidence to indicate that the underlying disease process in ME/CFS, and the consequences it may have on lifestyle, reduces overall life expectancy.”

Dr Charles Shepherd, Trustee and Hon. Medical Adviser, to the ME Association.

It is often reported that the first official recorded death from ME/CFS was that of 32-year old, Sophia Mirza in 2005. However, these data record 9 deaths partly or fully attributed to ME/CFS between 2001 and 2004.

Audio commentary by Dr Katrina Pears

Dr Katrina Pears,
Research Correspondent.
The ME Association.

Dr Katrina Pears - MEA Research Correspondent
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