Preprint Mapping the Symptom Profile and Burden of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome ME/CFS: [TIMES Survey], 2026, Tyson & Fleming

SNT Gatchaman

SNT Gatchaman

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Mapping the Symptom Profile and Burden of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome ME/CFS: Insights from the TIMES Survey.
Sarah F Tyson; Russell Fleming

OBJECTIVE
To characterise the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHOD
1028 adults with ME/CFS completed The Index of ME Symptoms (TIMES) online. Raw ordinal data were Rasch transformed into interval data so parametric statistics were used.

RESULTS
Mean TIMES score was 57.2/100 (sd 5.4) indicating a severe symptom burden affecting multiple body systems. The correlations between symptom burden, age and duration were negligible, and moderate with ME/CFS severity. Women had a greater symptom burden than men. All participants experienced fatigue, neurological symptoms and dysautonomia. The mean Fatigue Scale score was severe (67.7 (sd 19.9)) and moderate for the Neurological Scale (mean 45.11 (sd 9.45)) and Dysautonomia Scale (43.98 (sd 8.42)). Over 90% experienced cognitive, pain, motor-sensory, sleep, cardio-respiratory, cranial nerve and gastro-intestinal symptoms to some degree. They were mild-moderately troublesome overall, except cognitive symptoms which were severe.

Conclusions. ME/CFS causes a heavy multi-system symptom burden. Although most individual symptoms were mild-moderately troublesome, the cumulative effect was severe or very severe. Fatigue was the most common and troublesome problem followed by cognitive symptoms, sleep disturbance and pain. Women experienced a greater symptom burden than men, and there was a moderate relationship between symptom burden and disease severity.

Web | DOI | PDF | Preprint: MedRxiv | Open Access
 
I see only three mentions of PEM.
All participants experienced fatigue (which includes PEM), neurological symptoms and dysautonomia to some degree.
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However, our results broadly concur with the other large surveys detailed in the introduction7-9 in that they highlight the primacy of fatigue (including PEM) and cognitive symptoms.
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Post exertional malaise was the lowest scoring fatigue-related symptom.
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Mic drop......
 
This us what happens when you draw conclusions from a badly designed symptoms questionnaire. And compare it with other useless questionnaires.

You get a pile of nonsense.

I recall from our discussions of the questionnaire that some of the symptom groupings made no sense, as well as no weighting given to the impact of different sorts of symptoms, and they don't understand the central significance of PEM which gets hived off to a separate questionnaire.
 
to differentiate ME/CFS from other conditions such as multiple sclerosis or long covid (for example [5,6])
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So, it seems that the authors are seeing ME/CFS as different from Long Covid. And they are seeing Long Covid as a single condition.

I wonder if that is an MEA endorsed view?


Edit - and yet later in the paper it seems that the authors think Long Covid is synonymous with ME/CFS after Covid-19

One hundred and fifty-eight (15.1%) reported their ME/CFS had been triggered by a covid-19 infection (referred to as ‘long covid).
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There were no differences in TIMES-total between those with ME/CFS and the long covid group (whose ME/CFS was triggered by a Covid-19 infection)
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A different condition or the same thing? Both can't be true.
 
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I'm not really sure what is the purpose or utility of this.
This range of symptoms highlights how ME/CFS affects multiple body symptoms. It clearly illustrates that the label ‘chronic fatigue syndrome’ is a misnomer which fails to accurately reflect this multi-facetted disease.
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I guess there is pointing out the obvious, which is not without utility, but it doesn't really add anything to it, since the concept of "chronic fatigue" isn't rooted in fact, and isn't meant to be. It's explicitly a term of dismissal.
Clinical services currently focus on fatigue management using pacing techniques15. They need to move beyond this to recognise the full range of ME/CFS symptoms and relevant co-morbidities, and develop clinical pathways to address them, as recommended in the 2021 NICE Guidance for ME/CFS.
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I don't think it's accurate to say that services focus on fatigue management using pacing techniques. They claim the illusion of focusing on fatigue, why they don't understand, or know anything more than the average patient does, and they understand PEM even less, and don't apply pacing, which isn't a technique, correctly. There is no need to pretend that they are doing what they have never actually attempted to do. The services are built on some vague, generic bullshit model of conversion disorder / fear of who the hell knows what.
No other studies have used the TIMES to assess ME/CFS symptomology, so direct comparisons with other literature is not possible. However, our results broadly concur with the other large surveys detailed in the introduction7-9 in that they highlight the primacy of fatigue (including PEM) and cognitive symptoms
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Well, yeah, then why do this study, then? There are plenty of questionnaires and studies that have captured this for decades, and it never changes anything. Hell even very low scores on the standard SF-36 are simply dismissed and ignored when it comes to us, it's not as if a specialized questionnaire can change anything when common instruments aren't even acknowledged when it's inconvenient.
 
I'm so upset that this work was funded by The ME Association and that the authors seems like they don't understand PEM from what is written in this paper.

Acknowledgements: The authors would like to thank the members of the advisory groups for their unstinting support and the invaluable knowledge and insights they provided.

Funding: This work was funded by the ME Association, UK

Disclosure Statement: The authors report no conflicts of interest but note that Mr Fleming is employed by the ME Association as the head of project development
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