Tag: DePaul Symptom Questionnaire

Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic illness with post-exertional malaise (PEM) as a key symptom. This study categorized participants with ME/CFS who met PEM criteria into four groups based on severity of physical and mental PEM: severe physical PEM (Physical group), severe mental PEM (Mental group), both severe (Both group), or neither severe (Neither group). A control group was also included.

The Both group exhibited the highest symptom severity, while the Neither group displayed lower scores. The Neither group experienced less disability than other ME/CFS subtypes but was significantly more disabled than Controls. Health assessments revealed that Controls had the highest functioning, followed by the Neither group, with the Both group showing greatest impairment. These results indicate distinct PEM subtypes, emphasizing the need to recognize different manifestations of this complex symptom. Future research should include diverse control groups, longitudinal data, and biological measures to further understand PEM subtypes.

Source: Tuzzolino K, Jason LA, Furst J. Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations. J Health Psychol. 2026 Feb 28:13591053261420598. doi: 10.1177/13591053261420598. Epub ahead of print. PMID: 41761780. https://pubmed.ncbi.nlm.nih.gov/41761780/

The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach

Abstract:

Background/objectives: Impaired sleep is one of the core symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), yet the mechanisms and impact of sleep-related issues are poorly understood. Sleep dysfunctions for patients with ME/CFS include frequent napping, difficulties falling asleep, waking up early, and sleep reversal patterns (e.g., sleeping throughout the day and staying awake throughout the night). The current study focuses on sleep reversal for patients with ME/CFS.

Methods: We explored the symptoms and functional impairment of those with and without sleep reversal by analyzing the responses of a large international sample (N = 2313) using the DePaul Symptom Questionnaire (DSQ) and Medical Outcomes Study 36-item Short-Form Health Survey (SF-36).

Results: We found that those in our Sleep Reversal group (N = 327) compared to those without sleep reversal (N = 1986) reported higher symptom burden for 53 out of 54 DSQ symptoms and greater impairments for all six SF-36 subscales. The most accurate predictors of sleep reversal included age (p < 0.05), body mass index (p < 0.05), eleven DSQ symptoms (p < 0.01), and two SF-36 subscales (p < 0.01).

Conclusions: These features provide clues regarding some of the possible pathophysiological underpinnings of sleep reversal among those with ME/CFS.

Source: Dietrich MP, Pravin R, Furst J, Jason LA. The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach. Healthcare (Basel). 2025 May 26;13(11):1255. doi: 10.3390/healthcare13111255. PMID: 40508869. https://www.mdpi.com/2227-9032/13/11/1255 (Full text)

The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often experience autonomic symptoms. In the present study, we evaluated 193 adults seeking treatment for ME/CFS, who were recruited from an outpatient clinic. The participants completed a head-up tilt table test to assess two common types of orthostatic intolerance, namely, postural orthostatic tachycardia syndrome (POTS) and orthostatic hypotension (OH).
During the tilt test, 32.5% of the participants demonstrated POTS or OH. The participants with either of these two common types of orthostatic intolerance were found to have more problems with sleep and post-exertional malaise as assessed by the DePaul Symptom Questionnaire; these patients also reported more physical and health function limitations. The implications of the findings are discussed.
Source: Jason LA, McGarrigle WJ, Vermeulen RCW. The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Personalized Medicine. 2024; 14(3):238. https://doi.org/10.3390/jpm14030238 https://www.mdpi.com/2075-4426/14/3/238 (Full text)

Fatigue and symptom-based clusters in post COVID-19 patients: a multicentre, prospective, observational cohort study

Abstract:

Background: In the Netherlands, the prevalence of post COVID-19 condition is estimated at 12.7% at 90-150 days after SARS-CoV-2 infection. This study aimed to determine the occurrence of fatigue and other symptoms, to assess how many patients meet the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) criteria, to identify symptom-based clusters within the P4O2 COVID-19 cohort and to compare these clusters with clusters in a ME/CFS cohort.

Methods: In this multicentre, prospective, observational cohort in the Netherlands, 95 post COVID-19 patients aged 40-65 years were included. Data collection at 3-6 months after infection included demographics, medical history, questionnaires, and a medical examination. Follow-up assessments occurred 9-12 months later, where the same data were collected. Fatigue was determined with the Fatigue Severity Scale (FSS), a score of ≥ 4 means moderate to high fatigue. The frequency and severity of other symptoms and the percentage of patients that meet the ME/CFS criteria were assessed using the DePaul Symptom Questionnaire-2 (DSQ-2). A self-organizing map was used to visualize the clustering of patients based on severity and frequency of 79 symptoms. In a previous study, 337 Dutch ME/CFS patients were clustered based on their symptom scores. The symptom scores of post COVID-19 patients were applied to these clusters to examine whether the same or different clusters were found.

Results: According to the FSS, fatigue was reported by 75.9% of the patients at 3-6 months after infection and by 57.1% of the patients 9-12 months later. Post-exertional malaise, sleep disturbances, pain, and neurocognitive symptoms were also frequently reported, according to the DSQ-2. Over half of the patients (52.7%) met the Fukuda criteria for ME/CFS, while fewer patients met other ME/CFS definitions. Clustering revealed specific symptom patterns and showed that post COVID-19 patients occurred in 11 of the clusters that have been observed in the ME/CFS cohort, where 2 clusters had > 10 patients.

Conclusions: This study shows persistent fatigue and diverse symptomatology in post COVID-19 patients, up to 12-18 months after SARS-CoV-2 infection. Clustering showed that post COVID-19 patients occurred in 11 of the clusters that have been observed in the ME/CFS cohort.

Source: Cornelissen MEB, Bloemsma LD, Vaes AW, Baalbaki N, Deng Q, Beijers RJHCG, Noij LCE, Houweling L, Bazdar S, Spruit MA, Maitland-van der Zee AH; on behalf of the P4O2 Consortium. Fatigue and symptom-based clusters in post COVID-19 patients: a multicentre, prospective, observational cohort study. J Transl Med. 2024 Feb 21;22(1):191. doi: 10.1186/s12967-024-04979-1. PMID: 38383493. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-04979-1 (Full text)

Psychometric evaluation of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) among adults with Long COVID, ME/CFS, and healthy controls: A machine learning approach

Abstract:

Long COVID shares a number of clinical features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), including post-exertional malaise, severe fatigue, and neurocognitive deficits. Utilizing validated assessment tools that accurately and efficiently screen for these conditions can facilitate diagnostic and treatment efforts, thereby improving patient outcomes.

In this study, we generated a series of random forest machine learning algorithms to evaluate the psychometric properties of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) in classifying large groups of adults with Long COVID, ME/CFS (without Long COVID), and healthy controls.

We demonstrated that the DSQ-SF can accurately classify these populations with high degrees of sensitivity and specificity. In turn, we identified the particular DSQ-SF symptom items that best distinguish Long COVID from ME/CFS, as well as those that differentiate these illness groups from healthy controls.

Source: McGarrigle WJ, Furst J, Jason LA. Psychometric evaluation of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) among adults with Long COVID, ME/CFS, and healthy controls: A machine learning approach. J Health Psychol. 2024 Jan 28:13591053231223882. doi: 10.1177/13591053231223882. Epub ahead of print. PMID: 38282368. https://pubmed.ncbi.nlm.nih.gov/38282368/

How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms

Our study involves collaboration/participation in order to develop culturally sensitive multinational tools for assessing post viral symptoms.

We discuss the creation of questionnaires using patient participation, and the translation of these questionnaires using international collaboration.

Patient engagement in collaboration on the creation and use of these types of instruments is of particular importance for patients who historically have not been true partners in collaborative efforts to understand diseases.

This has occurred for those with the post-viral illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which has generated considerable resentment and estrangement among the patient community.

Our article reviews:

1) why participation of diverse groups/patients is important in the development of instruments to measure key symptoms of ME/CFS,

2) why the ME/CFS group of patients needs to be included specifically (as an example),

and

3) why structured health questionnaires are important/useful.

Our article also has an overall aim of demonstrating collaborative efforts with patients and others on creating multinational scales.

We provide examples of participatory processes used in developing and translating patient-driven instruments so that they can be used in non-English speaking countries.

Our article illustrates how patients and international researchers can be involved in efforts to develop and translate international assessment instruments to validly capture domains of unexplained illness like ME/CFS.

With the onset of another post-viral illness, Long COVID, there is a world-wide need to create valid and culturally sensitive assessment instruments to measure critical symptoms, many of which are similar to ME/CFS.

Source: Leonard A. Jason and Joseph A. Dorri. How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms. The Australian Community Psychologist., Volume 32 No 1  https://psychology.org.au/getmedia/c300a432-c7fd-4f97-9322-ce16429067e4/ac-vol-32(1)-2023-final-draft.pdf#page=63 (Full text)

Assessing symptoms of long/post COVID and chronic fatigue syndrome using the DePaul symptom questionnaire-2: a validation in a German-speaking population

Abstract:

Objective: A subset of Covid-19 survivors will develop persisting health sequelae (i.e. Long Covid/LC or Post Covid/PC) similar to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In the absence of a reliable biomarker to diagnose LC/PC and ME/CFS, their classification based on symptoms becomes indispensable. Hence, we translated and validated the DePaul Symptom Questionnaire−2 (DSQ-2), to offer a screening tool for the German-speaking population.

Methods: A sample of healthy adults, and adults with ME/CFS and LC/PC (N = 502) completed a reduced-item version of the DSQ-2 and SF-36 questionnaire online. We performed an exploratory factor analysis, assessed construct validity, diagnostic accuracy and compared the symptom profiles of individuals with ME/CFS versus LC/PC versus healthy adults.

Results: Exploratory factor analysis revealed a 10-factor solution with excellent internal consistencies. The sensitivity of the DSQ-2 was excellent. The specificity was moderate with moderate inter-rater reliability. Construct validity of the DSQ-2 was supported by strong negative correlations with physical health subscales of the SF-36. A visual comparison of the symptom profiles of individuals with ME/CFS versus LC/PC revealed a comparable pattern.

Conclusion: Despite lower symptom severity, individuals with LC/PC reported significantly stronger limitations in general health and physical functioning and were more likely to meet ME/CFS diagnostic criteria with ongoing sickness duration, suggesting that ME/CFS can be considered a long-term sequela of LC/PC. This study offers a translated and validated version of the reduced-item DSQ-2 that can guide medical evaluation and aid physicians in identifying a ME/CFS-like subtype of LC/PC.

Source: Nina Buntić, Leonard A. Jason, Jochen Schneider, Marc Schlesser & André Schulz (2023) Assessing symptoms of long/post COVID and chronic fatigue syndrome using the DePaul symptom questionnaire-2: a validation in a German-speaking population, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2023.2295419 https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2295419 (Full text)

Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection

Abstract:

It is still unclear why certain individuals after viral infections continue to have severe symptoms. We investigated if predicting myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) development after contracting COVID-19 is possible by analyzing symptoms from the first two weeks of COVID-19 infection.
Using participant responses to the 54-item DePaul Symptom Questionnaire, we built predictive models based on a random forest algorithm using the participants’ symptoms from the initial weeks of COVID-19 infection to predict if the participants would go on to meet the criteria for ME/CFS approximately 6 months later.
Early symptoms, particularly those assessing post-exertional malaise, did predict the development of ME/CFS, reaching an accuracy of 94.6%. We then investigated a minimal set of eight symptom features that could accurately predict ME/CFS. The feature reduced models reached an accuracy of 93.5%. Our findings indicated that several IOM diagnostic criteria for ME/CFS occurring during the initial weeks after COVID-19 infection predicted Long COVID and the diagnosis of ME/CFS after 6 months.
Source: Hua C, Schwabe J, Jason LA, Furst J, Raicu D. Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection. Psych. 2023; 5(4):1101-1108. https://doi.org/10.3390/psych5040073 https://www.mdpi.com/2624-8611/5/4/73

Developing and validating a brief screening scale for ME/CFS

Abstract:

Objective: The purpose of the current study was to develop and evaluate a brief screening instrument for ME/CFS. The current study identified 4 symptom items that identify those positive for the IOM ME/CFS case definition.

Study Design: A data set of over 2,000 patients with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and over 350 controls were assessed for the 4-item DePaul Symptom Questionnaire-Brief (DSQ-Brief). All respondents also completed the longer 54-item DePaul Symptom Questionnaire (DSQ-1) as well as the 14-item DePaul Symptom Questionnaire-Short Form (DSQ-SF). These data sets were collected from multiple countries.

We also examined the DSQ-Brief, DSQ-1, and DSQ-SF with other chronic illness groups [Multiple Sclerosis (MS) and Post-Polio Syndrome (PPS)] and those with Long COVID. Random Forest comparisons were employed in these analyses.

Results: When contrasting ME/CFS from controls, high levels of accuracy occurred using the DSQ-1, DSQ-SF, and DSQ-Brief. High accuracy again occurred for differentiating those with ME/CFS from MS, PPS, and Long COVID using the DSQ-1 and DSQ-SF, but accuracy was less for the DSQ-Brief.

Conclusions: The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses. However, it was possible to achieve better accuracy and identify those cases where misidentification occurred by administering the DSQ-SF or DSQ-1 following the DSQ-Brief. It is now possible to screen individuals for ME/CFS using the DSQ-Brief and in so doing, identify those who are most likely to have ME/CFS.

Source: Leonard A. Jason, Sage Benner, Jacob Furst & Paul Cathey (2023) Developing and validating a brief screening scale for ME/CFS, Fatigue: Biomedicine, Health & Behavior, 11:2-4, 176-187, DOI: 10.1080/21641846.2023.2252613 https://www.tandfonline.com/doi/abs/10.1080/21641846.2023.2252613

Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments

Abstract:

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS.

Methods: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as ‘bolt-ons’ to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.

Results: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.

Conclusions: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.

Source: Orji NC, Cox IA, Jason LA, Chen G, Zhao T, Rogerson MJ, Kelly RM, Wills K, Hensher M, Palmer AJ, de Graaff B, Campbell JA. Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments. Qual Life Res. 2023 Aug 10. doi: 10.1007/s11136-023-03498-8. Epub ahead of print. PMID: 37561337. https://link.springer.com/article/10.1007/s11136-023-03498-8 (Full text)