Deaths related to postviral fatigue syndrome

FOI reference: FOI-2026-3387

You asked

 I am writing to request under Freedom of Information, the mortality statistics for England and Wales relating to ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) recorded on death certificates.

Specifically, I would like data for deaths registered between 2017 and 2021 (or the most recent years available) where postviral fatigue syndrome/benign myalgic encephalomyelitis (ICD-10 code G93.3) was:

• recorded as the underlying cause of death, or
• mentioned anywhere on the death certificate

For these deaths, I would be grateful if you could provide:

1. number of deaths by age group at death,using either five-year(e.g. 20-24, 25-29, etc.) or ten-year age bands;
2. a breakdown by sex, if disclosure control permits;
3. an indication of whether the condition was recorded as the underlying causeor a contributory mention (if available). 

Please include deaths coded under ICD-10 G93.3 and any equivalent terminology used by ONS for ME/CFS. If possible, I would also welcome equivalent age-grouped data for the period 2001--2016, to allow comparison across time.  If the cause was suicide (which appears to be up to seven times increased by having ME) and this information can be shared, I would value that.

We said

Thank you for your request.  

Our mortality data comes from the information collected at death registration. All the conditions mentioned on the death certificate are coded using the International Classification of Diseases, Tenth Revision (ICD-10). From all of these causes an underlying cause of death is selected using ICD-10 coding rules.  

The underlying cause of death is defined by WHO as:   

• the disease or injury that initiated the train of events directly leading to death 

or 

• the circumstances of the accident or violence that produced the fatal injury   

The ICD-10 cause code for Postviral fatigue syndrome is G93.3.  

We have published Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales: 2017 to 2021 and Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016, which combine underlying cause and mentions on the death certificate and have 5-year age grouping for each year.  

Data on deaths registered between 2013 and 2024 with an underlying cause of Postviral fatigue syndrome by sex and age-group in England and Wales can be accessed using NOMIS. 

Instructions for use of this service:  

• Select geography (England and Wales, regional, or by local authority)  

• Select age (all ages, or five-year age bands)  

• Select gender (total, or male or female)  

• Select rates (all births, rates, or percentage of population, for example)  

• Select format (Excel or CSV, for example)  

We currently have not published any data where postviral fatigue syndrome/benign myalgic encephalomyelitis was an underlying cause or mention on the death certificate where suicide was also mentioned. However, we could produce a bespoke tabulation, dependent on disclosure control, showing the number of deaths where the underlying cause or any mention on the death certificate is postviral fatigue syndrome/benign myalgic encephalomyelitis (ICD-10 code G93.3) by sex and age in England and Wales since 2001. Such services are subject to legal frameworks, disclosure control, resources and agreements of costs. Please contact Health.Data@ons.gov.uk for more information on this service.

As this information is reasonably accessible via another route, even if only accessible on payment, Section 21(2)(a) of the Freedom of Information Act 2000 (FOIA) applies.