Mortality in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an updated analysis of memorial records, 2025, Sirotiak & Amro

Nightsong

Nightsong

Senior Member (Voting Rights)
ABSTRACT
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies have suggested a link between ME/CFS and premature mortality.

Objective: To update and expand upon previous findings by analyzing reported deaths among individuals with ME/CFS from a public online memorial list.

Methods: We reviewed 505 entries from the National CFIDS Foundation memorial list as of October 2024. Two coders coded for age at death, sex, year, location, and cause of death.

Results: The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was associated with the youngest average age at death (43.3 years, SD = 14.4).

Conclusions: ME/CFS appears to be associated with notable mortality, with suicide, cancer, and cardiovascular causes of death being particularly common. Many entries list ME/CFS or its complications as a cause of death, indicating that notable proportions of affected individuals and those close to them perceive ME/CFS as directly involved in mortality. Increased clinical awareness and targeted screening may be particularly important.

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I don't trust research based on obituaries because somebody once used them to claim gay people had far shorter life expectancies in order to push their homophobic narrative that it's unnatural and dangerous.

There's huge potential for bias: Some people's obituaries won't mention ME/CFS depending on the personal preferences, demographics, age and cause of death. And we don't know anything about the proportion who are still alive.
 
I explored the issues with this method in response to the previous paper here: https://tipsforme.wordpress.com/2016/10/24/learning-how-to-die/
Eg
  1. Findings are inconsistent – the literature review is conflicting, so this paper fits into that wider context of conflicting results
  2. The study is looking at if pwme die earlier from the same cause – so not asking if they are direct ME deaths (although I think this is a great angle for various reasons)
  3. Family, friends, and caregivers of deceased patients were recruited: this is the big methodological sticking point for me. I think this was worth doing but it means
    1. They acknowledge that severely ill patients were overrepresented – generally I think only relatives of severely ill patients engage as carers in this sense. It is unlikely that many relatives of people with mild ME could have been reached. Presumably people with mild ME won’t die as early, if the early deaths are related to ME.
    2. All of us still alive aren’t included. Some pwme may be 99 and exceeding average life expectancy but wouldn’t be included.
    3. Is it harder to get a ME/CFS diagnosis when you’re older? Just a suspicion, but I think older people are expected to endure more symptoms as part of old age. If I’m right, this means that older people with CFS/ME diagnosis will likely have been ill a long time (in contrast to some people missing an appropriate diagnosis).
    4. When people who are really old die they are unlikely to have caregivers who would have contributed to the study for various reasons (eg people who know about their ME have also died, they don’t see the death as related to ME etc)
    5. There is no comparison with other conditions and similar lifestyle. This is OK, but it means we can’t tease out the repercussions of a sedentary lifestyle and socioeconomic deprivation. Life expectancy varies quite a bit by neighbourhood and we can’t earn much so I presume we usually live in poorer conditions (not exact equivalent but “Healthy life expectancy (years of life in good health) can be as low as 54.4 years old for women in Manchester, compared to 72.2 years in Richmond upon Thames“). If this is the main cause it requires very different types of intervention.
  4. Sample size was 56. This isn’t crazy low but very different from the 2147 (likely ill defined) in the other study. It does mean that to find such a significant difference in this small sample really does mean that cardiovascular causes of death happened earlier for these people. With a larger replication the cancer and suicide differences may also be significant (feeling foggy – have I written that the right way around?). However, for this particular sample the only specific significant difference is cardiovascular (which wasn’t looked at in the larger study), in other words the cancer and suicide difference could just be chance.
I feel from this all you can say with confidence is that this small group of more severe patients, who have already died, died significantly earlier than the general US population, and those of them who died cardiovascular deaths did so significantly earlier than those in the general population who die cardiovascular related deaths.

By saying this I’m not dissing the researchers, they do include the relevant caveats, but our fears may lead us to overclaim in our minds what this research is saying. Replication may make these results more generalisable, but for the time being I don’t think we can know much about the age at which we will die from this one paper.
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