Excellent point. All you need to do is have exertional malaise be the combination of those other symptoms. I’d bet there’s an exertional malaise scale that’s already been used somewhere.
In fact, hold on I’ll do a quick google…
Hey, whaddayaknow! Found an example right out of the gates:
“ 2.2.1. First-Step DSQ Items Participants completed the DSQ which assessed the frequency and severity of ME and CFS symptoms [8]. The following five DSQ PEM items were recommended as a first step by the NIH/CDC CDE’s working group: “A dead, heavy feeling after exercise”, “Muscle weakness even after resting”, “Next day soreness after everyday activities”, “Mentally tired after the slightest effort”, and “Physically drained after mild activity”. These five DSQ PEM items were designed to assess the frequency and severity of PEM over a six-month time frame. Participants rated each PEM symptom’s frequency for the past six months on a 5-point Likert scale: 0 = none of the time, 1 = a little of the time, 2 = about half the time, 3 = most of the time, and 4 = all of the time. Similarly, participants rated each symptom’s severity over the past six months on a 5-point Likert scale: 0 = symptom not present, 1 = mild, 2 = moderate, 3 = severe, 4 = very severe. The DSQ has been shown to have good test-retest reliability [7], and the five DSQ PEM items have good internal reliability (α = 0.84).”
This was from a journal article titled:
A Brief Questionnaire to Assess Post-Exertional Malaise
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6165517/
Words matter. In the hearing industry there’s a test involving the repeating of words from lists designed to cover the full spectrum of speech. It helps to determine a few important things related to hearing loss. Many doctors avoid one of the lists, or at least skip the first word on it, “laud”, because so many people have no idea laud is a word. In other words, it’s important they know if the patient can’t understand speech at an audible level, which gets complicated if you’re asking them to repeat words they’ve never heard before. They’ll get it wrong, but for the wrong reason and it’s going to give you flawed data.
I think the LH results were sort of like that. If you ask the questions correctly (individual symptoms) you get good answers (reliable data). If you ask the question poorly (a phrase like “exertional malaise” that’s both a little too vague and also maybe a bit foreign or antiquated to people) you get poor results.
Lump it together as a combination of individual symptoms, or get rid of it and just leave the single and more reliable individual symptoms.
In fact, hold on I’ll do a quick google…
Hey, whaddayaknow! Found an example right out of the gates:
“ 2.2.1. First-Step DSQ Items Participants completed the DSQ which assessed the frequency and severity of ME and CFS symptoms [8]. The following five DSQ PEM items were recommended as a first step by the NIH/CDC CDE’s working group: “A dead, heavy feeling after exercise”, “Muscle weakness even after resting”, “Next day soreness after everyday activities”, “Mentally tired after the slightest effort”, and “Physically drained after mild activity”. These five DSQ PEM items were designed to assess the frequency and severity of PEM over a six-month time frame. Participants rated each PEM symptom’s frequency for the past six months on a 5-point Likert scale: 0 = none of the time, 1 = a little of the time, 2 = about half the time, 3 = most of the time, and 4 = all of the time. Similarly, participants rated each symptom’s severity over the past six months on a 5-point Likert scale: 0 = symptom not present, 1 = mild, 2 = moderate, 3 = severe, 4 = very severe. The DSQ has been shown to have good test-retest reliability [7], and the five DSQ PEM items have good internal reliability (α = 0.84).”
This was from a journal article titled:
A Brief Questionnaire to Assess Post-Exertional Malaise
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6165517/
Words matter. In the hearing industry there’s a test involving the repeating of words from lists designed to cover the full spectrum of speech. It helps to determine a few important things related to hearing loss. Many doctors avoid one of the lists, or at least skip the first word on it, “laud”, because so many people have no idea laud is a word. In other words, it’s important they know if the patient can’t understand speech at an audible level, which gets complicated if you’re asking them to repeat words they’ve never heard before. They’ll get it wrong, but for the wrong reason and it’s going to give you flawed data.
I think the LH results were sort of like that. If you ask the questions correctly (individual symptoms) you get good answers (reliable data). If you ask the question poorly (a phrase like “exertional malaise” that’s both a little too vague and also maybe a bit foreign or antiquated to people) you get poor results.
Lump it together as a combination of individual symptoms, or get rid of it and just leave the single and more reliable individual symptoms.
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