Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study

Highlights:

  • First time study on mental health and well-being among ME/CFS patients in Switzerland.
  • High level (68.5%) of stigmatization reported due to ME/CFS.
  • Overall, ME/CFS led to a third of the patients and to half of the male patients to have suicidal thoughts.
  • ME/CFS led to secondary depression in 14.8% of the patients.
  • Lack of disease recognition and adequate patient support.

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic disease of significant public health and clinical importance. It affects multiple systems in the body and has neuro-immunological characteristics. The disease is characterized by a prominent symptom called post-exertional malaise (PEM), as well as abnormalities in the immune-inflammatory pathways, mitochondrial dysfunctions and disturbances in neuroendocrine pathways. The purpose of this study was to evaluate the impact of ME/CFS on the mental health and secondary psychosocial manifestations of patients, as well as their coping mechanisms.

Method: In 2021, a descriptive cross-sectional study was conducted in Switzerland. A self-administered paper questionnaire survey was used to gather data from 169 individuals diagnosed with ME/CFS.

Results: The majority of the patients (90.5%) reported a lack of understanding of their disease, resulting in patients avoiding talking about the disease due to disbelief, trivialization and avoidance of negative reactions. They felt most supported by close family members (67.1%). Two thirds of the patients (68.5%) experienced stigmatization. ME/CFS had a negative impact on mental health in most patients (88.2%), leading to sadness (71%), hopelessness for relief (66.9%), suicidal thoughts (39.3%) and secondary depression (14.8%). Half of the male patients experienced at least one suicidal thought since clinical onset. Factors significantly associated with depression were the lack of cure, disabilities associated with ME/CFS, social isolation and the fact that life was not worth anymore with ME/CFS. The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%), (ii) being at the end of one’s strength (80.7%) and (iii) not feeling being understood by others (80.7%).

Conclusion: This study provided first time significant insights into the mental and psychological well-being of ME/CFS patients in Switzerland. The findings highlight the substantial experiences of stigmatization, secondary depression and suicidal thoughts compared to other chronic diseases, calling for an urgent need in Switzerland to improve ME/CFS patient’s medical, psychological and social support, in order to alleviate the severe mental health burden associated with this overlooked somatic disease.

Source: Rahel Susanne König, Daniel Henry Paris, Marc Sollberger, Rea Tschopp.  Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study, HELIYON (2024), doi: https:// doi.org/10.1016/j.heliyon.2024.e27031. https://www.sciencedirect.com/science/article/pii/S2405844024030627 (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)

Navigating the Spectrum of Two Pediatric COVID-19 Complications: Multi-System Inflammatory Syndrome in Children and Post-Acute Sequelae of SARS-CoV-2 Infection

Abstract:

Purpose: This review summarizes the current scope of understanding associated with two common post-infectious complications associated with COVID-19 infection: Multi-System Inflammatory Syndrome in Children (MIS-C) and Post-Acute Sequelae of SARS-CoV-2 infection (PASC). It identifies current gaps in the knowledge and issues that may limit the ability to fill these gaps. This review provides a framework to drive continued research.

Methods: A comprehensive review of the current literature was performed, identifying seminal articles describing the emergence of MIS-C and PASC, and works from the literature focused on the clinical implications and pathophysiologic understanding of these disorders.

Findings: Although pediatric patients experienced few severe cases of acute COVID-19 infection, the burden of disease from post-infectious sequelae is substantial. Mortality is low, but morbidity is significant. There are still numerous unknowns about the pathophysiology of both MIS-C and PASC; however, with widespread immunity developing after increased vaccination and prior infection, it may be difficult to perform adequate prospective studies to answer pathophysiologic questions. Long-term sequalae of MIS-C seem to be minimal whereas, by definition, PASC is an ongoing problem and may be severe.

Implications: The rapid sharing of information regarding novel conditions such as MIS-C and PASC are key to interventions related to future post-infectious sequelae outside of those stemming from COVID-19. Although MIS-C seems unlikely to return as a clinical condition in substantial numbers, there is still significant learning that can be gleaned from existing patients about general aspects of epidemiology, equity, and pathophysiology. There is significant morbidity associated with PASC and additional resources need to be dedicated to determining appropriate and effective therapies moving forward.

Source: Parzen-Johnson S, Katz BZ. Navigating the Spectrum of Two Pediatric COVID-19 Complications: Multi-System Inflammatory Syndrome in Children and Post-Acute Sequelae of SARS-CoV-2 Infection. J Clin Med. 2024 Feb 18;13(4):1147. doi: 10.3390/jcm13041147. PMID: 38398460. https://www.mdpi.com/2077-0383/13/4/1147 (Full text)

A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, long COVID (LC). Although LC is a heterogeneous condition, about half of cases have typical post-viral fatigue with onset and symptoms that are very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A key question is whether these conditions are closely related. ME/CFS is a post-stressor fatigue condition that arises from multiple triggers.

To investigate the pathophysiology of LC, a pilot study of patients (n = 6) and healthy controls (n = 5) has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins. A principal component analysis separated all long COVID patients from healthy controls. Analysis of 3131 proteins identified 162 proteins differentially regulated, of which 37 were related to immune functions, and 21 to mitochondrial functions.

Markov cluster analysis identified clusters involved in immune system processes, and two aspects of gene expression-spliceosome and transcription. These results were compared with an earlier dataset of 346 differentially regulated proteins in PBMC’s from ME/CFS patients (n = 9) analysed by the same methodology. There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions.

Source: Peppercorn, K., Edgar, C.D., Kleffmann, T. et al. A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome. Sci Rep 13, 22068 (2023). https://doi.org/10.1038/s41598-023-49402-9 https://www.nature.com/articles/s41598-023-49402-9 (Full text)

Dysautonomia following Lyme disease: a key component of post-treatment Lyme disease syndrome?

Abstract:

Dysautonomia, or dysfunction of the autonomic nervous system (ANS), may occur following an infectious insult and can result in a variety of debilitating, widespread, and often poorly recognized symptoms. Dysautonomia is now widely accepted as a complication of COVID-19 and is an important component of Post-Acute Sequelae of COVID-19 (PASC or long COVID).

PASC shares many overlapping clinical features with other infection-associated chronic illnesses including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post-Treatment Lyme Disease Syndrome (PTLDS), suggesting that they may share common underlying mechanisms including autonomic dysfunction.

Despite the recognition of this complication of Lyme disease in the care of patients with PTLD, there has been a scarcity of research in this field and dysautonomia has not yet been established as a complication of Lyme disease in the medical literature.

In this review, we discuss the evidence implicating Borrelia burgdorferi as a cause of dysautonomia and the related symptoms, propose potential pathogenic mechanisms given our knowledge of Lyme disease and mechanisms of PASC and ME/CFS, and discuss the diagnostic evaluation and treatments of dysautonomia. We also outline gaps in the literature and priorities for future research.

Source: Adler BL, Chung T, Rowe PC, Aucott J. Dysautonomia following Lyme disease: a key component of post-treatment Lyme disease syndrome? Front Neurol. 2024 Feb 8;15:1344862. doi: 10.3389/fneur.2024.1344862. PMID: 38390594; PMCID: PMC10883079. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10883079/ (Full text)

Prevalence of persistent SARS-CoV-2 in a large community surveillance study

Abstract:

Persistent SARS-CoV-2 infections may act as viral reservoirs that could seed future outbreaks1-5, give rise to highly divergent lineages6-8 and contribute to cases with post-acute COVID-19 sequelae (long COVID)9,10. However, the population prevalence of persistent infections, their viral load kinetics and evolutionary dynamics over the course of infections remain largely unknown.

Here, using viral sequence data collected as part of a national infection survey, we identified 381 individuals with SARS-CoV-2 RNA at high titre persisting for at least 30 days, of which 54 had viral RNA persisting at least 60 days. We refer to these as ‘persistent infections’ as available evidence suggests that they represent ongoing viral replication, although the persistence of non-replicating RNA cannot be ruled out in all.

Individuals with persistent infection had more than 50% higher odds of self-reporting long COVID than individuals with non-persistent infection. We estimate that 0.1-0.5% of infections may become persistent with typically rebounding high viral loads and last for at least 60 days. In some individuals, we identified many viral amino acid substitutions, indicating periods of strong positive selection, whereas others had no consensus change in the sequences for prolonged periods, consistent with weak selection. Substitutions included mutations that are lineage defining for SARS-CoV-2 variants, at target sites for monoclonal antibodies and/or are commonly found in immunocompromised people11-14. This work has profound implications for understanding and characterizing SARS-CoV-2 infection, epidemiology and evolution.

Source: Ghafari M, Hall M, Golubchik T, Ayoubkhani D, House T, MacIntyre-Cockett G, Fryer HR, Thomson L, Nurtay A, Kemp SA, Ferretti L, Buck D, Green A, Trebes A, Piazza P, Lonie LJ, Studley R, Rourke E, Smith DL, Bashton M, Nelson A, Crown M, McCann C, Young GR, Santos RAND, Richards Z, Tariq MA, Cahuantzi R; Wellcome Sanger Institute COVID-19 Surveillance Team; COVID-19 Infection Survey Group; COVID-19 Genomics UK (COG-UK) Consortium; Barrett J, Fraser C, Bonsall D, Walker AS, Lythgoe K. Prevalence of persistent SARS-CoV-2 in a large community surveillance study. Nature. 2024 Feb 21. doi: 10.1038/s41586-024-07029-4. Epub ahead of print. PMID: 38383783. https://www.nature.com/articles/s41586-024-07029-4 (Full text)

Mechanisms underlying exercise intolerance in long COVID: An accumulation of multisystem dysfunction

Abstract:

The pathogenesis of exercise intolerance and persistent fatigue which can follow an infection with the SARS-CoV-2 virus (“long COVID”) is not fully understood. Cases were recruited from a long COVID clinic (N = 32; 44 ± 12 years; 10 (31%) men), and age-/sex-matched healthy controls (HC) (N = 19; 40 ± 13 years; 6 (32%) men) from University College London staff and students.

We assessed exercise performance, lung and cardiac function, vascular health, skeletal muscle oxidative capacity, and autonomic nervous system (ANS) function. Key outcome measures for each physiological system were compared between groups using potential outcome means (95% confidence intervals) adjusted for potential confounders. Long COVID participant outcomes were compared to normative values.

When compared to HC, cases exhibited reduced oxygen uptake efficiency slope (1847 (1679, 2016) vs. 2176 (1978, 2373) mL/min, p = 0.002) and anaerobic threshold (13.2 (12.2, 14.3) vs. 15.6 (14.4, 17.2) mL/kg/min, p < 0.001), and lower oxidative capacity, measured using near infrared spectroscopy (τ: 38.7 (31.9, 45.6) vs. 24.6 (19.1, 30.1) s, p = 0.001). In cases, ANS measures fell below normal limits in 39%.

Long COVID is associated with reduced measures of exercise performance and skeletal muscle oxidative capacity in the absence of evidence of microvascular dysfunction, suggesting mitochondrial pathology. There was evidence of attendant ANS dysregulation in a significant proportion. These multisystem factors might contribute to impaired exercise tolerance in long COVID sufferers.

Source: Jamieson A, Al Saikhan L, Alghamdi L, Hamill Howes L, Purcell H, Hillman T, Heightman M, Treibel T, Orini M, Bell R, Scully M, Hamer M, Chaturvedi N, Montgomery H, Hughes AD, Astin R, Jones S. Mechanisms underlying exercise intolerance in long COVID: An accumulation of multisystem dysfunction. Physiol Rep. 2024 Feb;12(3):e15940. doi: 10.14814/phy2.15940. PMID: 38346773; PMCID: PMC10861355. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10861355/ (Full text)

Post-COVID-19 patients suffer from chemosensory, trigeminal, and salivary dysfunctions

Abstract:

Recent literature indicates that post-COVID-19 patients suffer from a plethora of complications, including chemosensory dysfunction. However, little attention has been given to understand the interactions between chemosensory, trigeminal, and salivary dysfunctions in these patients. The aims of this study were (1) to investigate the prevalence and combinations of chemosensory, trigeminal, and salivary dysfunctions, (2) to identify the odorants/tastants that are compromised, and (3) to explore possible associations between the four dysfunctions in post-COVID-19 patients.

One hundred post-COVID-19 patients and 76 healthy controls (pre-COVID-19) were included in this cross-sectional, case-controlled study. Participants’ smell, taste, trigeminal, and salivary functions were assessed. The patients had a significantly higher prevalence of parosmia (80.0%), hyposmia (42.0%), anosmia (53.0%), dysgeusia (34.0%), complete ageusia (3.0%), specific ageusia (27.0%), dysesthesia (11.0%) and dry mouth (18.0%) compared to controls (0.0% for all parameters, except 27.6% for hyposmia). Complete loss of bitter taste was the most prevalent specific ageusia (66.7%) and coffee was the most common distorted smell (56.4%). Seven different combinations of dysfunction were observed in the patients, the most common being a combination of olfactory and gustatory dysfunction (48.0%).

These findings indicate that post-COVID-19 patients experience a range of chemosensory, trigeminal, and salivary disturbances, occurring in various combinations.

Source: Rogn Å, Jensen JL, Iversen PO, Singh PB. Post-COVID-19 patients suffer from chemosensory, trigeminal, and salivary dysfunctions. Sci Rep. 2024 Feb 11;14(1):3455. doi: 10.1038/s41598-024-53919-y. PMID: 38342941; PMCID: PMC10859368. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10859368/ (Full text)

Cardiorespiratory abnormalities in ICU survivors of COVID-19 with Post-acute Sequelae of SARS-CoV-2 infection are unrelated to invasive mechanical ventilation

Abstract:

Post-acute Sequelae of SARS-CoV-2 infection (PASC) often leads to exertional intolerance and reduced exercise capacity, particularly in individuals previously admitted to an intensive care unit (ICU). However, the impact of invasive mechanical ventilation (IMV) on PASC-associated cardiorespiratory abnormalities during exercise remains poorly understood.

This single-center, cross-sectional study aimed to gather knowledge on this topic. Fifty-two patients with PASC recruited ~6 months after ICU discharge were clustered based on their need for IMV (PASC+IMV, n=27) or non-invasive support therapy (PASC+NIS, n=25). Patients underwent pulmonary function and cardiopulmonary exercise testing (CPX), and were compared to a reference group (CONTROL, n=19) comprising individuals of both sexes with similar age, comorbidities, and physical activity levels, but without a history of COVID-19 illness.

Individuals with PASC, irrespective of support therapy, presented with higher rates of cardiorespiratory abnormalities than CONTROL, especially dysfunctional breathing patterns, dynamic hyperinflation, reduced oxygen uptake and oxygen pulse, and blunted heart rate recovery (all P<0.05). Only the rate of abnormal oxygen pulse was greater among PASC+IMV than PASC+NIS (P=0.05). Mean estimates for all CPX variables were comparable between PASC-IMV and PASC-NIS (all P>0.05).

These findings indicate significant involvement of both central and peripheral factors, leading to exertional intolerance in individuals with PASC previously admitted to the ICU, regardless of their need for IMV.

Source: Longobardi I, Prado DMLD, de Andrade DCO, Goessler KF, de Oliveira Júnior GN, Azevedo RA, Leitão AE, Santos JVP, de Sá Pinto AL, Gualano B, Roschel H. Cardiorespiratory abnormalities in ICU survivors of COVID-19 with Post-acute Sequelae of SARS-CoV-2 infection are unrelated to invasive mechanical ventilation. Am J Physiol Heart Circ Physiol. 2024 Feb 9. doi: 10.1152/ajpheart.00073.2024. Epub ahead of print. PMID: 38334972. https://pubmed.ncbi.nlm.nih.gov/38334972/ (Full study available as PDF file)

The impact of “long COVID” on menstruation in Chinese female college students and the intervention of acupuncture

Abstract:

This study aimed to explore the potential application value of acupuncture in alleviating the impact of long COVID on women’s menstrual cycles, by investigating the occurrence of long COVID among female college students, its effects on menstruation, and the intervention of acupuncture. This cross-sectional study surveyed female college students with a history of coronavirus disease 2019 (COVID-19) before April 10, 2023.

A questionnaire was used to analyze demographic characteristics, post-COVID sequelaes, duration of symptoms, and treatments received during that period. Among the 731 participants enrolled in the survey, 468 were female undergraduate students who met the analysis criteria. Among them, 85 individuals fit the definition of “Long COVID” (18.16%).

Within the group of patients with long COVID, 69 individuals experienced changes in their overall menstrual patterns compared to the 6 months prior to contracting the novel coronavirus (81.18%). Additionally, 17 individuals opted for acupuncture treatment following the onset of COVID-19 (20.00%), which resulted in less impact on their menstrual cycle (41.18% vs 64.71% without receiving acupuncture, OR = 2.62), menstrual period duration (41.18% vs 64.71%, OR = 2.62), menstrual flow (47.06% vs 69.18%, OR = 2.52), and the color of menstrual blood (41.18% vs 63.24%, OR = 2.46) among these patients. Long COVID had a certain impact on menstruation.

Acupuncture potentially alleviates the clinical symptoms of long COVID and reduces its impact on women’s menstrual cycle, thus having potential therapeutic value in the treatment of long COVID.

Source: Dong J, Ni J, Zhang Z, Yan H, Xu J, Zhao J. The impact of “long COVID” on menstruation in Chinese female college students and the intervention of acupuncture. Medicine (Baltimore). 2024 Feb 9;103(6):e36818. doi: 10.1097/MD.0000000000036818. PMID: 38335408; PMCID: PMC10860984. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10860984/ (Full text)