Category: Health Status

ME/CFS and/or Long Covid in Aotearoa New Zealand: results from a food insecurity survey

Abstract:

Background: Various chronic health conditions are associated with household vulnerability to food insecurity. There is limited evidence regarding the prevalence of food insecurity or the experiences and challenges related to nutrition and food access among people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid (LC) in Aotearoa New Zealand.

Methods: Adults were recruited between June and September 2025 from online communities, support networks and primary care providers to complete an anonymous, online survey. Food insecurity was defined as ‘sometimes’ or ‘never’ being able to afford to eat properly, or ‘sometimes’ or ‘always’ having food run out, eating less, eating less variety due to cost, relying on others for food or using food grants/banks. Descriptive results were reported as percentages; multivariable risk ratios were estimated from generalised linear models. Quotes from open-ended questions were used to illustrate the quantitative findings.

Results: Among 333 respondents, half (50%) had experienced food insecurity in the past 12 months. There was an inverse-J shape association between food insecurity and disease severity. Younger respondents were more likely to face food insecurity than older respondents. Beyond financial constraints, reported challenges to adequate nutrition included physical limitations affecting going shopping, receiving online deliveries and preparing meals.

Conclusion: Findings support the need to recognise ME/CFS and LC as disabilities for the purposes of social service and income support provision, which could relieve some of the financial pressures on patients. We also recommend that GPs routinely screen for food insecurity among people with ME/CFS or LC.

Source: Dey, K., Butler, J., Riordan Crichton, T., Jeffreys, I., & Jeffreys, M. (2026). ME/CFS and/or Long Covid in Aotearoa New Zealand: results from a food insecurity survey. Fatigue: Biomedicine, Health & Behavior, 1–15. https://doi.org/10.1080/21641846.2026.2688051 https://www.tandfonline.com/doi/full/10.1080/21641846.2026.2688051 (Full text)

Stigmatisation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a scoping review

Abstract:
Objective: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe chronic, multi-systemic disease characterised by post-exertional malaise (PEM), cognitive impairments and pain. There is no curative treatment yet. Stigmatisation is prevalent in several chronic illnesses, impacting patients’ quality of life and health outcomes. This review aims to examine the types and effects of stigmatisation experienced by individuals with ME/CFS.
Methods: This scoping review followed the PRISMA-ScR guidelines. A systematic literature search was  executed across six electronic databases, complemented by citation searching. The screening was performed independently by two researchers.
Results: We included 44 studies in this review. The most commonly assessed type of stigma was  perceived stigma (n = 7); however, the majority of studies (n = 33) did not specify the type of stigma assessed. Our findings showed that not only individuals with ME/CFS can be affected by stigmatisation, but also people in their social circles such as friends and family members. Stigmatisation was reported in various areas of life, but the most frequently identified issue were stigmatising experiences by healthcare professionals such as physicians. Stigmatisation was found to contribute to poorer health outcomes, delays in diagnosis, and broader personal and societal consequences.
Conclusion: Individuals with ME/CFS can be profoundly affected by stigmatisation. Further research  should investigate experiences of children and (very) severely ill patients. Research is also needed to develop strategies to reduce stigmatisation in healthcare and other settings and to improve the quality  of care for individuals with ME/CFS.
Note: ©American Psychological Association, 2026. This paper is not the copy of record and may not exactly replicate the authoritative document published in the APA journal. The final article is available, upon publication, at: [ARTICLE DOI] Stigmatisation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a scoping review
Source: Patricia Vester, Stefanos Boudouroglou-Walter, Chantal Wieting, Prof. Dr. Jonas Schreyögg, Niklas Dammann, Annemarie Feißel, Dr. Katharina Piontek, PD Dr. Christine Blome. Stigmatisation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a scoping review. https://www.researchgate.net/publication/406829675_Stigmatisation_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome_MECFS_-_a_scoping_review (Full text)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome diagnostic reporting in the 2021-2023 National Health Interview Survey

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disabling illness characterized by activity limitations associated with fatigue, post-exertional malaise (PEM), unrefreshing sleep, memory and concentration problems, orthostatic intolerance and painful discomfort. While typically considered to be a chronic condition, some persons who have had ME/CFS report no longer having the disorder. Here, the prevalence and characteristics of adults in the United States who self-report having an ME/CFS diagnosis and those who self-report no longer having ME/CFS are presented.

Methods: The current study utilized publicly available data from the 2021-2023 National Health Interview Survey, which interviewed 86,655 United States civilian non-institutionalized adults about their health. For this study, participants were categorized into three groups: Current ME/CFS (individuals currently diagnosed with ME/CFS), Past ME/CFS (individuals who were previously diagnosed but no longer report having the condition), and Never ME/CFS (individuals who have never been diagnosed with ME/CFS). These groups were characterized using descriptive statistics.

Results: In the United States adult population, 20.7% of the estimated 1.5% adults who ever received an ME/CFS diagnosis report they no longer have the condition (Past ME/CFS). Overall the Past ME/CFS group reported experiencing symptoms less frequently, less difficulty with daily living, approximately equal prevalence of comorbidities, and better general health status than the Current ME/CFS group but remained significantly impaired compared to the Never ME/CFS group. However, 40-50% of adults with Past ME/CFS report symptoms and function similar to adults with Current ME/CFS and only approximately 25% had substantially less symptoms and better function compared to those with Current ME/CFS. Comorbidities did not differ significantly between the Current and Past ME/CFS groups.

Conclusion: Further study to better understand the reasons why those in the Past ME/CFS group report no longer having the disorder is important for understanding the natural history and disease burden of ME/CFS. Studying symptomatic remissions, and the underlying physiology of improvement, could lead to identification of new disease modifying therapeutic approaches.

Source: Fleig K, Nahin R, Stussman B, Wilkerson M, Unger ER, Lin JS, Walitt B. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome diagnostic reporting in the 2021-2023 National Health Interview Survey. BMC Public Health. 2026 May 8. doi: 10.1186/s12889-026-27598-5. Epub ahead of print. PMID: 42104344. https://link.springer.com/article/10.1186/s12889-026-27598-5 (Full text available as PDF file)

Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease

Abstract:

Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have suggested that ME/CFS incidence across age groups is bimodal–a characteristic that could provide insight into the aetiology of the disease. Here, we analysed survey data from over 9,000 respondents with ME/CFS from 10 European countries, and observe an early onset peak with a mean of 16.0 years old (standard deviation [sd]: 4.3) and a late onset peak at 36.6 years old (sd: 10.5).

Statistical support for multimodal onset age was evident in 7 of the 10 countries examined. Infection as a trigger for ME/CFS is 10 percentage points higher among early compared to late onset disease (P = 2.1 × 10−13). Early onset ME/CFS was associated with greater odds of being severely or very severely affected (OR = 2.15, 95% CI [1.84—2.51], p < 2 × 10−16). Those with first degree relatives with ME/CFS had greater odds of early than late onset ME/CFS (OR = 1.43, 95% CI [1.25—1.63], P = 4.4 × 10−07). We further validated our findings in a UK dataset where we replicated bimodal onset age and observed significantly greater odds of glandular fever/infectious mononucleosis as a trigger in early onset cases (OR = 2.32, 95% CI [1.99—2.71], P = 2.4 × 10−24).

Our findings suggest that incidence of ME/CFS peaks in adolescence and in early middle-age and that early onset ME/CFS is more common in those with affected relatives, more often triggered by infection, and associated with more severe disease.

Source: Simon J Mcgrath, Charles B Hillier, Joshua J Dibble, Trude Schei, Arild Angelsen, Audrey A Ryback, Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease, Oxford Open Immunology, 2026;, iqag007, https://doi.org/10.1093/oxfimm/iqag007 https://academic.oup.com/ooim/advance-article/doi/10.1093/oxfimm/iqag007/8527015

Gut Microbiome Wellness Index 2 enhances health status prediction from gut microbiome taxonomic profiles

Abstract:

Recent advancements in translational gut microbiome research have revealed its crucial role in shaping predictive healthcare applications. Herein, we introduce the Gut Microbiome Wellness Index 2 (GMWI2), an enhanced version of our original GMWI prototype, designed as a standardized disease-agnostic health status indicator based on gut microbiome taxonomic profiles.

Our analysis involves pooling existing 8069 stool shotgun metagenomes from 54 published studies across a global demographic landscape (spanning 26 countries and six continents) to identify gut taxonomic signals linked to disease presence or absence. GMWI2 achieves a cross-validation balanced accuracy of 80% in distinguishing healthy (no disease) from non-healthy (diseased) individuals and surpasses 90% accuracy for samples with higher confidence (i.e., outside the “reject option”).

This performance exceeds that of the original GMWI model and traditional species-level α-diversity indices, indicating a more robust gut microbiome signature for differentiating between healthy and non-healthy phenotypes across multiple diseases. When assessed through inter-study validation and external validation cohorts, GMWI2 maintains an average accuracy of nearly 75%.

Furthermore, by reevaluating previously published datasets, GMWI2 offers new insights into the effects of diet, antibiotic exposure, and fecal microbiota transplantation on gut health. Available as an open-source command-line tool, GMWI2 represents a timely, pivotal resource for evaluating health using an individual’s unique gut microbial composition.

Source: Chang, D., Gupta, V.K., Hur, B. et al. Gut Microbiome Wellness Index 2 enhances health status prediction from gut microbiome taxonomic profiles. Nat Commun 15, 7447 (2024). https://doi.org/10.1038/s41467-024-51651-9 https://www.nature.com/articles/s41467-024-51651-9 (Full text)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS

Abstract:

Background and Objectives: We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey.

Materials and Methods: A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L).

Results: Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18-82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%).

Conclusions: The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities.

Source: Muirhead NL, Vyas J, Ephgrave R, Singh R, Finlay AY. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS. Medicina (Kaunas). 2024 Jul 27;60(8):1215. doi: 10.3390/medicina60081215. PMID: 39202496. https://www.mdpi.com/1648-9144/60/8/1215 (Full text)

Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study

Abstract:

Background and objectives: Individuals with Myalgic Encephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the everyday activities reported to cause or increase symptoms in ME, and is not accessible for those with severe or very severe illness. The aim of this study was to assess the feasibility and acceptability of a home-based testing protocol to measure physiological responses in ME to everyday activity.

Methods: Researchers attended participants’ homes to collect data and provide equipment for independent testing. Adults with ME who met the International Consensus Criteria wore a portable metabolic assessment system and a physiological stress monitor. Blood pressure, heart rate, oxygen saturation and lactic acid were assessed during a range of everyday positions and activities in their own homes.

Results: Online recruitment yielded 70 volunteers in 24 h. 17 eligible individuals reflecting a range of illness severities were enrolled. All participants found the procedures acceptable with 12 (70%) subjects completing every listed activity. Apparent physiological abnormalities were identified in all participants.

Conclusion: Physiological measurement during everyday activities was feasible for our participants who represented a range of ME severities. Activities must be adapted for different levels of severity to avoid significant symptom exacerbation. Further research is needed to develop home-based assessment protocols to advance the biobehavioral understanding of ME.

Trial registration number: ISRCTN78379409

Source: Nicola Clague-Baker, Sarah Tyson, Karen Leslie, Helen Dawes, Michelle Bull & Natalie Hilliard (2023) Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2023.2245584 https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2245584 (Full text)

Recommendations for Successful Implementation of the Use of Vocal Biomarkers for Remote Monitoring of COVID-19 and Long COVID in Clinical Practice and Research

Abstract:

The COVID-19 pandemic accelerated the use of remote patient monitoring in clinical practice or research for safety and emergency reasons, justifying the need for innovative digital health solutions to monitor key parameters or symptoms related to COVID-19 or Long COVID. The use of voice-based technologies, and in particular vocal biomarkers, is a promising approach, voice being a rich, easy-to-collect medium with numerous potential applications for health care, from diagnosis to monitoring.

In this viewpoint, we provide an overview of the potential benefits and limitations of using voice to monitor COVID-19, Long COVID, and related symptoms. We then describe an optimal pipeline to bring a vocal biomarker candidate from research to clinical practice and discuss recommendations to achieve such a clinical implementation successfully.

Source: Fischer A, Elbeji A, Aguayo G, Fagherazzi G. Recommendations for Successful Implementation of the Use of Vocal Biomarkers for Remote Monitoring of COVID-19 and Long COVID in Clinical Practice and Research. Interact J Med Res. 2022 Nov 15;11(2):e40655. doi: 10.2196/40655. PMID: 36378504; PMCID: PMC9668331. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9668331/ (Full text)

Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: A mixed-methods systematic review

Abstract:

Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a fluctuating complex condition. More common in women than men, it tends to develop between mid-20s and mid-40s, including the main childbearing age (15–45 years). There are currently no systematic reviews summarising evidence relating to ME/CFS and pregnancy. The lack of quality assessed, and systematic summary evidence makes it harder for people with ME/CFS to make informed decisions about pregnancy, and harder for health care professionals to offer evidence-based care. This mixed methods systematic review aims to examine and summarise existing evidence relating to ME/CFS and pregnancy, both in relation to pregnancy outcomes and experiences of pregnancy but also the effect of pregnancy on ME/CFS severity and symptoms.

Methods This review followed a convergent segregated design. Seven electronic databases, relevant grey literature, reference lists of relevant reviews, and reference lists and citations of all included studies, were searched. Where necessary, authors were contacted for additional information. Studies of any design published in English, reporting on ME/CFS and pregnancy/postpartum (up to two years), risk of pregnancy outcomes with ME/CFS, or experiences during pregnancy for mother, partner or health and social care professionals following pregnancy with ME/CFS were included. Three researchers performed screening, data extraction and quality assessments independently. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses, respectively (meta-analysis was not appropriate). Findings were integrated through configuration.

Results Searches identified n=2,789 studies, n=10 met our inclusion criteria. There were five quantitative studies, two qualitative studies and three pieces of grey literature. Preliminary results suggest that evidence is conflicting. In the qualitative literature, one study suggested one participant thought pregnancy improved ME/CFS symptoms while the other noted a participant commented that ME/CFS may have adversely affected her pregnancy. Of the four quantitative studies that reported on ME severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one study found most women had no change in ME/CFS symptoms during pregnancy, and one found ME/CFS improved during pregnancy. Only one study reported on pregnancy outcomes, finding a higher rate of spontaneous abortions, and increased developmental and learning delays in infants born to mothers with ME/CFS.

Conclusion Current evidence on ME/CFS in pregnancy is limited, and findings are inconsistent. Studies are limited by small sample size and currently, there is no UK evidence. More high-quality research into ME/CFS and pregnancy is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

Source: Pearce M, Slack E, Pears K, et alOP72 Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic reviewJ Epidemiol Community Health 2022;76:A35. https://jech.bmj.com/content/76/Suppl_1/A35.1

Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection

Abstract:

Prospective cohort studies following individuals from acute infections have documented a prevalent post-infective fatigue state meeting diagnostic criteria for chronic fatigue syndrome (CFS) – that is, a post-infective fatigue syndrome (PIFS). The Dubbo Infection Outcomes Study (DIOS) was a prospective cohort following individuals from acute infection with Epstein-Barr virus (EBV), Ross River virus (RRV), or Q fever through to assessment of caseness for CFS designated by physician and psychiatrist assessments at 6 months. Previous studies in DIOS have revealed that functional genetic polymorphisms in both immunological (pro- and anti-inflammatory cytokines) and neurological (the purinergic receptor, P2X7) genes are associated with both the severity of the acute infection and subsequent prolonged illness.

Principal components analysis was applied to self-report data from DIOS to describe the severity and course of both the overall illness and concurrent mood disturbance. Associations between demographics and acute infection characteristics, with prolonged illness course as well as the PIFS outcome were examined using multivariable statistics. Genetic haplotype-driven functional variations in the neuropeptide Y (NPY) gene previously shown to be associated with brain responses to stress, and to trait anxiety were also examined as predictors.

The sample included 484 subjects (51% female, median age 32, IQR 19-44), of whom 90 (19%) met diagnostic criteria for CFS at 6 months. Participants with greater overall illness severity and concurrent mood disturbance in the acute illness had a more prolonged illness severity (HR = 0.39, 95% CI: 0.34-0.46, p < 0.001) and mood disturbance (HR = 0.36, 95% CI: 0.30-0.42, p < 0.001), respectively. Baseline illness severity and RRV infection were associated with delayed recovery.

Female gender and mood disturbance in the acute illness were associated with prolonged mood disturbance. Logistic regression showed that the odds of an individual being diagnosed with PIFS increased with greater baseline illness severity (OR = 2.24, 95% CI: 1.71-2.94, p < 0.001). There was no association between the NPY haplotypes with overall illness severity or mood disturbance either during the acute illness phase or with prolonged illness (p > 0.05). Severe acute infective illnesses predicted prolonged illness, prolonged mood disturbance and PIFS. These factors may facilitate early intervention to manage both PIFS and mood disturbances.

Source: Sandler CX, Cvejic E, Valencia BM, Li H, Hickie IB, Lloyd AR. Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection. Front Neurol. 2022 Jul 25;13:935442. doi: 10.3389/fneur.2022.935442. PMID: 35959390; PMCID: PMC9359311. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9359311/ (Full text)