ME Association Research Review: Mortality in ME/CFS

[Dolphin]

ME Association:

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

https://meassociation.org.uk/kw5d

https://twitter.com/user/status/1729428764633772238

 

[Adrian]

ME Association:

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

https://meassociation.org.uk/kw5d

I suspect this is an understatement as well. I assume this is based on what is recorded on death certs and this will depend on whether doctors choose to put ME as a contributing factor.

The data looks interesting in that there is an uptick in recording of deaths around 2010. I could see two reasons the first could be that there is an increase in doctor awareness (but the numbers are still very low so it doesn't seem likely) the other is austerity and cuts in benefits, difficulties getting disability benefits and general healthcare cuts.

It would have been interesting to see see more causal analysis (them mention suicide and malnutrition at various points)

 

[NelliePledge]

Presumably this is mainly at the suggestion/request of the family, or where a specialist such as Dr Weir has been advising.

what gets put on death certificates can change over time for example pneumonia used to be reported as the cause of death for people with dementia, because dementia wasn’t talked about. whilst pneumonia it might have been the immediate cause the brain disease of various types of dementia caused the frailty/loss of function. Nowadays dementia is the highest cause of death in females in the uk.

if Drs had a better understanding of ME presumably the numbers of people with it on their death certificates would be somewhat higher but how much is a big question.

 

[Peter T]

what gets put on death certificates can change over time for example pneumonia used to be reported as the cause of death for people with dementia, because dementia wasn’t talked about. whilst pneumonia it might have been the immediate cause the brain disease of various types of dementia caused the frailty/loss of function. Nowadays dementia is the highest cause of death in females in the uk.

If I remember correctly there were similar issues around the claim that red wine prevented coronary heart disease as in the UK heart failure was the go to cause of death when there was no reason to undertake an autopsy whereas in France it was not. So the difference in deaths due to coronary heart disease was attributed to the fact that the French drink more red wine than the British, whereas it was more likely to reflect medical reporting habits.

We do need ME to be recorded more often on death certificates world wide if it is to be taken seriously as a biomedical condition, even though for many it is not the immediate trigger it is for many a significant contributory factor.