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Post Exertional Symptoms Are Similar in Male and Female Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Nguyen et al

Discussion in 'ME/CFS research' started by Nightsong, Apr 18, 2025.

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  1. Nightsong

    Nightsong Senior Member (Voting Rights)

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    Abstract:
    BACKGROUND: ME/CFS is an illness which is exclusively diagnosed through reported symptoms. Most people affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) remain undiagnosed. A hallmark feature of ME/CFS is post-exertional malaise (PEM), the worsening of symptoms following exertion. It is unknown whether PEM presents differently based on sex.

    PURPOSE: Compare PEM symptoms reported by males and females with ME/CFS after cardiopulmonary exercise testing (CPET).

    METHODS: Males and females described symptoms using an open-ended questionnaire during and following two days of exertion. Exertion was standardized by using objective criteria for maximal exertion. Symptoms were then classified into 20 categories. Fisher's exact test was used to compare the percentages of men versus women endorsing each symptom category for each time point while the Mann-Whitney U test was used to compare the mean number of symptom categories reported and time needed to recover from the CPETs. A p<0.05 was considered significant.

    RESULTS: During and following the CPETs, 25.6% more women reported gastrointestinal disturbances compared to men (34.3% vs. 8.7%, p=0.02). Conversely, 24 hours after the first CPET, 15.7% more men reported light-headedness (21.7% vs. 6.0%, p=0.04). Otherwise, men and women recounted similar symptoms. Immediately and 24 hours after the 2nd CPET, women endorsed slightly more symptom categories than men (3.5±1.8 vs. 2.6±1.5 and 3.7±2.1 vs. 2.8±1.7, respectively, both p=0.04). Fifty-two percent of women and forty-five percent of men took more than a week to recover (p=0.56). The remaining participants took 4.9 ± 2.1 days and 4.8 ± 1.8 days, respectively, to return to their baseline (p=0.58).

    CONCLUSIONS: Except for gut symptoms and light-headedness, men and women with ME/CFS experienced similar symptoms during PEM. There were no differences in recovery time. Practitioners should ask about these two symptoms when attempting to identify PEM.
    __

    https://scholarlycommons.pacific.edu/rcs/2025/events/84/

    [ Part of a "Research and Creativity Showcase" at Pacific University, April 2025 ]
     
    Nightsong, Apr 18, 2025
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  2. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Do we have data on this? I know under- and over-diagnosis are problems, but most would imply at least 50 % of cases are not diagnosed.
    And by excluding alternative explanations.
     
    Utsikt, Apr 18, 2025
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  3. Hutan

    Hutan Moderator Staff Member

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    This looks to have been a good project, aiming to better define post-exertional symptoms.

    One problem though is that, although the title of the study gets it right, calling what they have studied 'post-exertional symptoms' the abstract
    suggests that they assumed that 'post-exertional symptoms' are PEM. These are not the same things. It's a problem we have seen a lot of researchers who use CPETs make.
     
    Hutan, Apr 18, 2025
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  4. Hutan

    Hutan Moderator Staff Member

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    From a very blurry memory, there was one study, I think involving Leonard Jason, where they phoned a community sample and asked them about their symptoms, and found that 90% of people who reported symptoms that would meet ME/CFS criteria had not been diagnosed.
     
    Last edited: Apr 18, 2025
    Hutan, Apr 18, 2025
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  5. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Very good point! The PEM fact sheet has taken that into account by trying to differentiate between normal post-exertional effects and PEM. Even so, I had not thought about it this way before you pointed it out now.
     
    Utsikt, Apr 18, 2025
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  6. Nightsong

    Nightsong Senior Member (Voting Rights)

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    From CFS: A Review of Epidemiology and Natural History Studies (Jason et al, 2009):
    [10] Jason LA, Richman JA, Rademaker AW, et al. A community-based study of chronic fatigue syndrome. Arch Intern Med 1999;159:2129–2137
     
    Nightsong, Apr 18, 2025
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  7. Hutan

    Hutan Moderator Staff Member

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    Authors:
    Anthony Nguyen, University Of the PacificFollow
    Addisen Azevedo, University Of the PacificFollow
    Lily Chu, Workwell FoundationFollow
    Todd Davenport, University of the PacificFollow
    Staci Stevens, Workwell FoundationFollow
    Jared Stevens, Workwell FoundationFollow
    Mark Van Ness, Univeristy of the Pacific

    These people are very experienced ME/CFS researchers. I think they should be aware of the difference between post-exertional symptoms and post-exertional malaise.

    Perhaps the issue is a difference in the definition of PEM between me and these researchers - perhaps they define PEM as any increase in symptoms (during and) after exertion?

    The abstract is disappointing. The authors have used a sentence to tell us about the problem of many people with ME/CFS being undiagnosed, which has almost no relevance to the study. They took a sentence to tell us what P value was assumed to be significant - something that is pretty irrelevant in an abstract where they are reporting actual P values. But they have not told us about their sample size or about whether the participants were matched on age, BMI, fitness, disease severity or time from disease onset, things that are surely more important when evaluating whether this study really tells us about sex differences.
     
    Hutan, Apr 18, 2025
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  8. Utsikt

    Utsikt Senior Member (Voting Rights)

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    Utsikt, Apr 18, 2025
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  9. Hutan

    Hutan Moderator Staff Member

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    Yes, but it is easy for people with all sorts of health problems to tick the boxes of the Fukuda criteria. My memory of the study is that it doesn't really tell us much other than there are many people with fatigue and other symptoms who aren't getting diagnosed. I don't think it should be being used to support a statement that 90% of people with ME/CFS are undiagnosed.

    (Of course, I don't know what evidence these authors cited to support their statement about percentage undiagnosed. But, I feel that they have put a red herring in their abstract that absolutely does not need to be there.)
     
    Hutan, Apr 18, 2025
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  10. Yann04

    Yann04 Senior Member (Voting Rights)

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    I actually think the vast majority of ME/CFS researchers assume PESE and PEM are the same thing. (PESE = Post Exertional Symptom Exacerbation).

    Which is problematic. Given it completely misses out of the very important aspect of worsening disability and worsening of the threshold to trigger PEM most pwME experience.
     
    Yann04, Apr 19, 2025
    #10
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