Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences

Abstract:

There have been numerous iterations of naming convention specified for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). As health care turns to “big data” analytics to gain insights, the Google Trends database was mined to ascertain worldwide trends of public interest in several ME- and CFS-related search categories between 2004 and 2019.
Time series analysis revealed that though “Chronic Fatigue Syndrome” remains the predominant search category in the ME and CFS field, the interest index declined at a rate of 2.77 per month during the 15-year study period. In the same time period, the interest index in “ME/CFS Hybrid” terms increased at a rate of 3.20 per month. Potential causal mechanisms for these trends and implications for patient sentiment analysis are discussed.
Source: Bhatia, S., & Jason, L. A. (2023). Using Data Mining and Time Series to Investigate ME and CFS Naming Preferences. Journal of Disability Policy Studies, 0(0). https://doi.org/10.1177/10442073231154027

Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID patients have overlapping neurological, autonomic, pain, and post-exertional symptoms. We compared volumes of brainstem regions for 10 ME/CFS (CCC or ICC criteria), 8 long COVID (WHO Delphi consensus), and 10 healthy control (HC) subjects on 3D, T1-weighted MRI images acquired using sub-millimeter isotropic resolution using an ultra-high field strength of 7 Tesla.

Group comparisons with HC detected significantly larger volumes in ME/CFS for pons (p = 0.004) and whole brainstem (p = 0.01), and in long COVID for pons (p = 0.003), superior cerebellar peduncle (p = 0.009), and whole brainstem (p = 0.005). No significant differences were found between ME/CFS and long COVID volumes. In ME/CFS, we detected positive correlations between the pons and whole brainstem volumes with “pain” and negative correlations between the midbrain and whole brainstem volumes with “breathing difficulty.”

In long COVID patients a strong negative relationship was detected between midbrain volume and “breathing difficulty.” Our study demonstrated an abnormal brainstem volume in both ME/CFS and long COVID consistent with the overlapping symptoms.

Source: Thapaliya K, Marshall-Gradisnik S, Barth M, Eaton-Fitch N, Barnden L. Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients. Frontiers in Neuroscience, 2023 March 2; 17:1125208. https://www.frontiersin.org/articles/10.3389/fnins.2023.1125208/full (Full text)

Two-year follow-up of patients with post-COVID-19 condition in Sweden: a prospective cohort study

Summary:

Background: Few studies have reported the long-term health effects of COVID-19. The regional population-based Linköping COVID-19 study (LinCoS) included all patients hospitalised due to COVID-19 during the first pandemic wave. Four months post-discharge, over 40% (185/433) experienced persisting symptoms and activity/participation limitations, indicating post-COVID-19 condition (PCC). The present follow-up study aimed to determine the long-term recovery among these patients 24 months post-admission.

Methods: This prospective cohort study included all patients from LinCoS with PCC at four months post-discharge. We repeated the same structured interview at a 24-month follow-up to identify persisting symptoms and their impact on daily life. Intercurrent health issues were identified by reviewing medical records.

Findings: Of 185 patients with PCC at 4 months post-discharge, 181 were alive at the 24-month assessment and 165 agreed to participate. Of those, 21% (35/165) had been readmitted to hospital for various causes in the interim period. The majority of patients (139/165, 84%) reported persisting problems affecting everyday life at 24 months. Significant improvements were seen in the prevalence and magnitude of some symptoms/limitations compared with four months post-discharge. Cognitive, sensorimotor, and fatigue symptoms were the most common persisting symptoms at 24 months. No clear difference was evident between individuals treated in the intensive care unit (ICU) and non-ICU-treated individuals. Approximately half of those who were on sick leave related to PCC at four months after infection were on sick leave at 24 months.

Interpretation: This is one of the first studies to report 2-year outcomes in patients with PCC following COVID-19 hospitalisation. Despite some improvements over time, we found a high prevalence of persisting symptoms and a need for long-term follow-up and rehabilitation post COVID-19 infection.

Source: Carl Wahlgren et al. Two-year follow-up of patients with post-COVID-19 condition in Sweden: a prospective cohort study. The Lancet Regional Health – Europe. DOI:https://doi.org/10.1016/j.lanepe.2023.100595 https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00013-3/fulltext (Full text)

The Very Long COVID: Persistence of Symptoms after 12–18 Months from the Onset of Infection and Hospitalization

Abstract:

According to the World Health Organization’s definition, long COVID is the persistence or development of new symptoms 3 months after the initial infection. Various conditions have been explored in studies with up to one-year follow-up but very few looked further. This prospective cohort study addresses the presence of a wide spectrum of symptoms in 121 patients hospitalized during the acute phase of COVID-19 infection, and the association between factors related to the acute phase of the disease and the presence of residual symptoms after one year or longer from hospitalization.
The main results are as follows: (i) post-COVID symptoms persist in up to 60% of the patient population at a mean follow-up of 17 months; (ii) the most frequent symptoms are fatigue and dyspnea, but neuropsychological disturbances persist in about 30% of the patients (iii) when corrected for the duration of follow-up with a freedom-from-event analysis; only complete (2 doses) vaccination at the time of hospital admission remained independently associated with persistence of the major physical symptoms, while vaccination and previous neuropsychological symptoms remained independently associated with persistence of major neuropsychological symptoms.
Source: Ranucci M, Baryshnikova E, Anguissola M, Pugliese S, Ranucci L, Falco M, Menicanti L. The Very Long COVID: Persistence of Symptoms after 12–18 Months from the Onset of Infection and Hospitalization. Journal of Clinical Medicine. 2023; 12(5):1915. https://doi.org/10.3390/jcm12051915 https://www.mdpi.com/2077-0383/12/5/1915 (Full text)

Health system support among patients with ME/CFS in Switzerland

Abstract:

in English, Arabic

Objectives: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is challenged by poor knowledge among health care professionals and the historical misconception that the disease is psychological in nature. This study assessed the health-related challenges faced by patients with ME/CFS in Switzerland and examined whether they receive adequate health care.

Methods: Quantitative and qualitative data were collected through a self-administered questionnaire between June and September of 2021, among 169 patients with ME/CFS in Switzerland.

Results: The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS affected children and youth were correctly diagnosed before their 18th birthday. The mean time from disease onset to diagnosis was 6.7 years, and patients had an average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis rate and insufficient disease knowledge among health professionals in Switzerland led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients (90.5%) were told at least once that their symptoms were psychosomatic. Swiss patients expressed high dissatisfaction with the health system and indicated that physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees.

Conclusion: This study highlights that poor disease knowledge among health care providers in Switzerland has led to high patient dissatisfaction, and delays in ME/CFS diagnoses and prescription of inappropriate therapies, thus adding to patient distress and disease burden.

Source: Tschopp R, König RS, Rejmer P, Paris DH. Health system support among patients with ME/CFS in Switzerland. J Taibah Univ Med Sci. 2023 Jan 4;18(4):876-885. doi: 10.1016/j.jtumed.2022.12.019. PMID: 36852237; PMCID: PMC9957780. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9957780/ (Full text)

The role of serum brain injury biomarkers in individuals with a mild-to-moderate COVID infection and Long-COVID – results from the prospective population-based COVI-GAPP study

Abstract:

Background During and after mild (no hospitalization) or moderate (hospitalization without ICU) SARS-CoV-2 infections, a wide range of symptoms, including neurological disorders have been reported. It is, however, unknown if these neurological symptoms are associated with brain injury and whether brain injury and related symptoms also emerge in patients suffering from Long-COVID. Neuronal biomarkers such as serum neurofilament light chain and glial fibrillary acidic protein can be used to elucidate neuro-axonal and astroglial injuries. We therefore investigated whether these biomarkers are associated with the COVID-19 infection status (mild-to-moderate), the associated symptoms and Long-COVID.

Methods From 146 individuals of the general population with a post-acute, mild-to-moderate SARS-CoV-2 infection, serum neurofilament light chain (sNfL; marker of intra-axonal neuronal injury) and serum glial fibrillary acidic protein (sGFAP; marker of astrocytic activation/injury) were measured. Samples were taken before, during and after (five and ten months) a SARS-CoV-2 infection. Individual symptoms and Long-COVID status were assessed using questionnaires.

Results Neurological symptoms were described for individuals after a mild and moderate COVID-19 infection, however, serum markers of brain injury (sNfL/sGFAP) did not change after an infection (sNfL: P = 0.74; sGFAP: P = 0.24) and were not associated with headache (P = 0.51), fatigue (P = 0.93), anosmia (P = 0.77) and ageusia (P = 0.47). In participants with Long-COVID, sGFAP (P = 0.038), but not sNfL (P = 0.58) significantly increased but was not associated with neurological symptoms.

Conclusion Neurological symptoms in individuals after a mild-to-moderate SARS-CoV-2 infection with and without Long-COVID were not associated with brain injury, although there was some astroglial injury observed in Long-COVID patients.

Source: Julia Telser, Kirsten Grossmann, Ornella C Weideli, Dorothea Hillmann, Stefanie Aeschbacher, Niklas Wohlwend, Laura Velez, Jens Kuhle, Aleksandra Maleska, Pascal Benkert, Corina Risch, David Conen, Martin Risch, Lorenz Risch. The role of serum brain injury biomarkers in individuals with a mild-to-moderate COVID infection and Long-COVID – results from the prospective population-based COVI-GAPP study. medRxiv 2023.02.15.23285972; doi: https://doi.org/10.1101/2023.02.15.23285972 https://www.medrxiv.org/content/10.1101/2023.02.15.23285972v1.full-text (Full text)

Left atrial longitudinal strain analysis in long Covid-19 syndrome

Abstract:

It is known that during the active course of Coronavirus disease 2019 (COVID-19), myocardial injury has an established pathological base, while its myocardial injury post-recovery is still obscured.

The aim of this study was to evaluate the longitudinal left atrial strain (LAS) using speckle tracking echocardiography (STE) in COVID-19-recovered patients who are previously healthy without confounder comorbidities to detect the potential cardiac dysfunction. 200 patients were prospectively included and examined 4?12 weeks after recovery from COVID-19 infection. 137 participants with comorbidities or previous history of cardiopulmonary disease were excluded from the analysis. A total of 63 patients who fulfilled our inclusion criteria were recruited into two groups according to the presence or absence of persistent dyspnoea and exercise intolerance. Clinical, laboratory & comprehensive echocardiographic examinations were done for all.

We observed that 31.7% of the previously healthy individuals developed dyspnoea & exercise intolerance post-COVID-19 infection. There were significantly impaired LAS parameters in the symptomatic group (LA reservoir, contraction & conduit strain, 22.7%, -6.6% & -16.1% versus 40%, -12%, and ? 27% in the asymptomatic group with P < 0.000).

Only LA reservoir strain and LA stiffness can independently predict the development of dyspnoea & exercise intolerance post-COVID-19 at cut-off values of 30% & 24.5% respectively with a sensitivity of 90% and a specificity of 91%, P < 0.001. These impaired LAS parameters could explain the developed symptoms post-COVID-19 recovery, even before disturbed conventional diastolic echocardiographic parameters. LAS parameters are significantly associated with the developed exertional dyspnoea & exercise intolerance post-COVID-19. LA reservoir strain & LA stiffness could provide a simple, easily available tool that points to early LV diastolic dysfunction and may direct the therapy in this subset of the population.

Source: ZeinElabdeen SG, Sherif A, Kandil NT, Altabib AMO, Abdelrashid MA. Left atrial longitudinal strain analysis in long Covid-19 syndrome. Int J Cardiovasc Imaging. 2023 Feb 14:1–6. doi: 10.1007/s10554-023-02801-5. Epub ahead of print. PMID: 36786877; PMCID: PMC9927057. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9927057/ (Full text)

An Exploratory Factor Analysis of Long Covid

Abstract:
An exploratory factor analysis (EFA) can provide a window into the latent dimensions of a disease, such as Long COVID.
Discovering the latent factors of Long COVID enables researchers and clinicians to better conceptualize, study and treat
this disease.
In this study, participants were recruited from social media sites dedicated to COVID and Long COVID. Among the 480 participants, those who completed at least 90% of the survey, reported symptoms for two or more months since COVID-19 symptom onset, and had not been hospitalized for COVID were used in the EFA. The mean duration since initial symptom onset was 74.0 (37.3) weeks.
A new questionnaire called The DePaul Symptom Questionnaire-COVID was used to assess self-reports of the frequency and severity of 38 Long COVID symptoms experienced over the most recent month. The most burdensome symptoms were “Symptoms that get worse after physical or mental activities (also known as Post-Exertional Malaise),” “Fatigue/extreme tiredness,” “Difficulty thinking and/or concentrating,” “Sleep problems,” and “Muscle aches.” The EFA resulted in a three-factor model with factors labeled General, PEM/Fatigue/Cognitive Dysfunction, and Psychological, consisting of 16, 6, and 3 items respectively (25 items in total).
The reliability of the items in the EFA was .90 using a split-half reliability test. Finally, participant self-reported level of
functional impairment was analyzed across the three EFA factors. Interpretations and applications to research and
practice are provided.
Source: Joseph A. Dorri1 and Leonard A. Jason. An exploratory factor analysis of long covid. Central Asian Journal of Medical Hypotheses and Ethics. 2/14/23 https://www.researchgate.net/publication/368502945_AN_EXPLORATORY_FACTOR_ANALYSIS_OF_LONG_COVID (Full text)

Living with “long COVID”: A systematic review and meta-synthesis of qualitative evidence

Abstract:

Objectives: Long-term health consequences of coronavirus disease (COVID-19), also known as “long COVID,” has become a global health concern. In this systematic review, we aimed to synthesize the qualitative evidence on lived experiences of people living with long COVID that may inform health policymaking and practice.

Methods: We searched six major databases and additional sources and systematically retrieved relevant qualitative studies and conducted a meta-synthesis of key findings using the Joanna Briggs Institute (JBI) guidelines and reporting standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist.

Results: We found 15 articles representing 12 studies out of 619 citations from different sources. These studies provided 133 findings that were categorized into 55 categories. All categories were aggregated to the following synthesized findings: living with complex physical health problems, psychosocial crises of long COVID, slow recovery and rehabilitation, digital resources and information management, changes in social support, and experiences with healthcare providers, services, and systems. Ten studies were from the UK, and others were from Denmark and Italy, which highlights a critical lack of evidence from other countries.

Conclusions: More representative research is needed to understand long COVID-related experiences from diverse communities and populations. The available evidence informs a high burden of biopsychosocial challenges among people with long COVID that would require multilevel interventions such as strengthening health and social policies and services, engaging patients and caregivers in making decisions and developing resources, and addressing health and socioeconomic disparities associated with long COVID through evidence-based practice.

Source: Hossain MM, Das J, Rahman F, Nesa F, Hossain P, Islam AMK, Tasnim S, Faizah F, Mazumder H, Purohit N, Ramirez G. Living with “long COVID”: A systematic review and meta-synthesis of qualitative evidence. PLoS One. 2023 Feb 16;18(2):e0281884. doi: 10.1371/journal.pone.0281884. PMID: 36795701; PMCID: PMC9934341. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9934341/ (Full text)

The Role of Interferons in Long Covid Infection

Abstract:

Although the new generation of vaccines and anti-COVID-19 treatment regimens facilitated the management of acute COVID-19 infections, concerns about post-COVID-19 syndrome or Long Covid are rising. This issue can increase the incidence and morbidity of diseases such as diabetes, and cardiovascular, and lung infections, especially among patients suffering from neurodegenerative disease, cardiac arrhythmias, and ischemia.

There are numerous risk factors that cause COVID-19 patients to experience post-COVID-19 syndrome. Three potential causes attributed to this disorder include immune dysregulation, viral persistence, and autoimmunity. Interferons (IFNs) are crucial in all aspects of post-COVID-19 syndrome etiology.

In this review, we discuss the critical and double-edged role of IFNs in post-COVID-19 syndrome and how innovative biomedical approaches that target IFNs can reduce the occurrence of Long Covid infection.

Source: Karbalaeimahdi M, Farajnia S, Bargahi N, Ghadiri-Moghaddam F, Rasouli Jazi HR, Bakhtiari N, Ghasemali S, Zarghami N. The Role of Interferons in Long Covid Infection. J Interferon Cytokine Res. 2023 Feb;43(2):65-76. doi: 10.1089/jir.2022.0193. PMID: 36795973. https://pubmed.ncbi.nlm.nih.gov/36795973/