Managing chronic fatigue conditions with overlapping symptoms, and the health policies and social services supporting those affected, 2025, Tate et al

Yes, I wondered that too.

The 'Towards a Better Understanding... 2023' paper says
A common initiator of ME/CFS is infection with the endemic virus, Epstein Barr Virus, that causes glandular fever, and yet it is estimated that perhaps only one in 10–20 develop the post-viral syndrome after being infected with this common virus [5].
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But that's not an individual's lifetime 'susceptibility to ME/CFS'. EBV is not the only potential cause of ME/CFS.


To recap, this is what they said
"Myalgic Encephalomyelitis/Chronic Fatigue syndrome (ME/CFS) is the name given to a post-viral/stressor syndrome that develops in the susceptible 5-10% of the population after a triggering event"

A lifetime risk is the combined risk of getting ME/CFS after EBV, and after each Covid-19 infection (and we know someone can get Covid-19 and be fine, and then get Covid-19 again and get ME/CFS), and after each flu infection and after Q fever and after Ross River Fever and so on. And the authors suggest that exposure to agrichemicals can cause ME/CFS as can
stressors like major surgery, or simply a challenging life event or an underlying health condition
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That's a lot of potential triggers in a lifetime.

And that combined risk for an individual may be modified by details of the triggers (what agrichemical?, what dose of toxin or pathogen? what strain? other environmental issues that we don't know about yet (e.g, maybe how hot you were when you were infected), and host issues such as genetics and age and sex that we are only beginning to understand. Not to mention random stuff.

Susceptibility doesn't even require the person to actually develop ME/CFS. It's a measure of the percentage of people who could develop ME/CFS if they were exposed to a feasible combination of factors that trigger it. Maybe no one is safe.

I know all this is detail, but it's indicative of the statements being made without evidence and without being mindful of the impact. There are dozens of statements that could be picked apart in the same way and found to not have a good basis.


(sorry for the edits fixing stuff)
 
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Jonathan Edwards said:
Absolutely @Hutan; there is no such figure. The causal dynamics are going to be complex as you later say.
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Yes. The irony is that the authors could have easily made an evidence based statement along the lines of

'Risk factors for development of ME/CFS are still very poorly known. Potentially, everyone, regardless of sex, ethnicity and background, has some risk of developing ME/CFS during their lifetime. Even a swift and successful recovery from one Covid-19 infection is no guarantee that a later Covid-19 infection will not trigger ME/CFS.'

That would have been so much more effective in suggesting ME/CFS is something governments and health systems should care about than the pulled out of the air statistic of '5 to 10% of people are susceptible'.
 
Utsikt said:
What’s the correct way to view it?
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To consider both systematic/predictable and stochastic causal factors of both internal and external origin, as any good epidemiology textbook will point out. The main issue is the internal stochastic element, which may account for 80% of causation in some conditions. There is also a confusion between 'environmental factor' and 'trigger'. Environmental factors may or may not be triggers in the temporal sense.
 
I’ve been trying to figure out what’s bothering me about the ‘overlapping symptoms/diagnoses/comorbidities’ framing. Generally speaking that is, not just specific to this particular paper - though here it’s highlighted right in the title

I think there are 2 issues, both problematic in different ways

1. From a science perspective there often seems to be confusion between overlapping symptoms and underlying pathways. I think many people mistakenly believe them to be the same thing.

But there is no 1:1 correspondence and, proliferation of Venn diagrams notwithstanding, comparing lists of non-specific symptoms can only get us so far (not very).

Specific patterns of symptoms can potentially be a bridge to pathways but apart from PEM I can’t think of any other such patterns shared between illnesses.

Comparing underlying pathways is where things get interesting but it’s also vastly more complicated and doesn’t justify the emphasis ‘overlapping symptoms/diagnoses/comorbidities’

2. From an advocacy perspective the focus on ‘overlapping’ runs directly counter to our fight for increased acceptance for ME/CFS as a valid separate entity

It risks playing straight into the hands of the Persistent Physical Symptoms (PPS) people with their transdiagnostic bucket and their false but superficially appealing logic that same symptoms=same thing wrong with all patients=same treatments must work for all

Many politicians, health authorities, welfare departments and so forth find this false logic persuasive – to our detriment

One reason many advocates favour the ‘overlapping’ framing may be a wish to show solidarity with other poorly served illnesses and/or an idea that together we’re stronger

That’s all good in principle but can end up being counterproductive, e.g. if it inadvertently supports PPS views or (further) undermines the credibility of all poorly understood illnesses

Where combining forces makes more sense is in addressing the similarly severe impact of all the illnesses on QoL, and on the similarly unfair underinvestment in research. Fighting for a fair share of research funding and for access to support services and payments based on disability irrespective of diagnosis is where solidarity can benefit everyone

But otherwise I think the framing of ‘overlapping symptoms/diagnoses/comorbidities’ is unhelpful and should be de-emphasised
 
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