Abstract Post-exertional malaise (PEM) is a key symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Currently, five PEM-items from the DePaul Symptom Questionnaire (DSQ) were recommended as a first step in measuring this symptom for patients with ME and CFS by the National Institutes of Health/Centers for Disease Control and Prevention (NIH/CDC) Common Data Elements’ (CDE) working group. The second step in this process, as recommended by the NIH/CDC CDE working group, involves assembling information from various sources to confirm the presence of PEM. There have not been any efforts, to date, to standardize this second-step process in the assessment of PEM. The current study examined whether five supplementary items on the DSQ could be used to operationalize the second step of the recommendations made by the NIH/CDC CDE working group. The five supplementary DSQ PEM duration items correctly categorized patients with ME or CFS 81.7% of the time, while incorrectly categorizing multiple sclerosis (MS) and post-polio syndrome (PPS) as ME or CFS only 16.6% of the time. The findings suggested that a PEM second-step process could be operationalized using supplementary DSQ items. Open access, www.mdpi.com/2075-4418/8/3/66/htm
The questions and scoring. Frequency Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time Severity Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3 = severe 4= very severe These questions ask the patients for frequency and severity as above: 1. Dead, heavy feeling after starting to exercise 2. Next day soreness or fatigue after non-strenuous, everyday activities 3. Mentally tired after the slightest effort 4. Minimum exercise makes you physically tired 5. Physically drained or sick after mild activity These questions are answered either Yes or No. 6. If you were to become exhausted after actively participating in extracurricular activities, sports, or outings with friends, would you recover within an hour or two after the activity ended? 7. Do you experience a worsening of your fatigue/energy related illness after engaging in minimal physical effort? 8. Do you experience a worsening of your fatigue/energy related illness after engaging in mental effort? This question asks for length of time (<1 h, 2–3 h, 4–10 h, 11–13 h, 14–23 h or ≥ 24 h) 9. If you feel worse after activities, how long does this last? This question is answered either Yes or No. 10. If you do not exercise, is it because exercise makes your symptoms worse? DSQ-PEM Scoring Scoring Step 1 Items 1–5: A frequency and severity score of 2, 2 on any items 1–5 is indicative of PEM. Scoring Step 2 Items 7, 8: Either item 7 or 8 must have an answer of yes to indicate an ME and/or CFS dx. Item 9: A response of >14 h is needed to indicate an ME and/or CFS dx. Items 6, 10: Neither item indicates an ME and/or CFS diagnosis, but provides a description of patient PEM for clinical evaluations.
good grief... how long's a piece of string?! It depends what the activity was & how much of it i did.
ME's PESE is often delayed by 3 days. I was often bedridden 3 days after doing something I had thought was within my capabilities and feeling fine till then. Yet I would not be diagnosed as having ME by this questionnaire. Why does Jason miss the mark about ME so often? Is he still caught up in the way they spoke about CFS?
