Tag: disability

Cardiopulmonary Exercise Testing Reveals Functional Limitations and Work Disability in Severe Post-COVID-19 and ME/CFS Patients

Abstract:

Background: Patients severely affected by post-COVID-19 condition (PCC) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often experience long-term work incapacity, contributing to a growing economic burden. Organ-centered clinical diagnostics frequently fail to explain their work disability.

Objectives: We aimed to objectively assess physical work ability using cardiopulmonary exercise testing (CPET) in a cohort of long-standing and severely affected PCC patients. We hypothesized: (1) patients with ME/CFS exhibit lower peak oxygen uptake (VO₂peak [mL/min/kg]) and peak power output (PPO [W/kg]) than those without; (2) most patients demonstrate objective work disability, closely aligned with subjective perception of disability; (3) oxygen pulse (O2 pulse [mL/bpm]) is reduced in ME/CFS, independent of comorbidity.

Methods: The study was conducted in the Department of Sports Medicine, Prevention and Rehabilitation at Johannes Gutenberg-University Mainz (Mainz, Germany). Between July 31, 2023, and March 31, 2025, a total of 92 PCC patients with suspected occupational disease underwent symptom-limited CPET and completed the Canadian Consensus Criteria, Bell Disability Scale (Bell-Score), and DePaul Symptom Questionnaire (Post-Exertional Malaise) Short Form (DSQ-PEM).

Results: Nearly half of the patients (49%) met ME/CFS criteria and 79% screened positive on the DSQ-PEM. ME/CFS patients showed significantly lower VO₂peak (13.0 ± 3.1 vs. 15.4 ± 4.9, p = 0.012), PPO (0.9 ± 0.3 vs. 1.1 ± 0.5, p = 0.014), and O₂ pulse (7.7 ± 2.0 vs. 8.5 ± 1.9, p = 0.047) compared to those without ME/CFS. Overall, 66% of patients met objective thresholds for work disability (VO₂peak < 15 mL/min/kg or PPO < 1 W/kg). Forty-five patients (51%) had a Bell-Score ≤ 30 and 82% from those had VO₂peak < 15 and/or PPO < 1. VO₂peak and PPO significantly correlated with Bell-Score (r = 0.3, p = 0.005 and r = 0.3, p = 0.003) and were the lowest among patients on medical sick leave (13.3 ± 3.3 and 0.9 ± 0.3), compared to those in occupational reintegration (16.0 ± 3.9, p = 0.04 and 1.2 ± 0.5, p = 0.024) or currently working (18.0 ± 7.1, p = 0.036 and 1.2 ± 0.5, p = 0.015).

Conclusions: Severely affected PCC patients exhibit objective work disability, particularly those with ME/CFS. VO₂peak and PPO are associated with subjective disability and occupational status. Therefore, early integration of CPET into clinical and occupational evaluations can inform individualized therapy planning and return-to-work decisions.

Trial registration DRKS, DRKS00032394. Registered 28 July 2023, https://drks.de/search/de/trial/DRKS00032394.

Source: Tomaskovic A, Weber V, Ochmann DT, Hillen B, Neuberger EWI, Brahmer A, Lachtermann E, Lieb K, Simon P. Cardiopulmonary Exercise Testing Reveals Functional Limitations and Work Disability in Severe Post-COVID-19 and ME/CFS Patients. Sports Med Open. 2026 Apr 27;12(1):50. doi: 10.1186/s40798-026-00995-1. PMID: 42043742. https://link.springer.com/article/10.1186/s40798-026-00995-1 (Full text)

Health, labour market, and social service outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on a health or disability related benefit: an Aotearoa | New Zealand nationwide cross-sectional study using the integrated data infrastructure

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic condition characterised by persistent fatigue and multisystem symptoms, often leading to long-term disability and socioeconomic disadvantage. In Aotearoa New Zealand (NZ), little is known about the health, labour market, and social service outcomes of people with ME/CFS.

Methods: We conducted a nationwide cross-sectional study using the Integrated Data Infrastructure (IDI) to identify a cohort of working-age individuals (16–64 years) receiving a health or disability-related benefit with a recorded ME/CFS diagnosis. Outcomes were compared to propensity score-matched cohorts: (1) benefit recipients without ME/CFS, and (2) a general population not receiving any benefit. We examined sociodemographic characteristics, co-occurring conditions, health service utilisation, disability support use, employment and income, and benefit reliance.

Results: The study population included 1,902 individuals with ME/CFS. Compared to the general population, the ME/CFS cohort had significantly higher rates of emergency department visits (18.8% vs. 12.8%) and pharmaceutical use (32.8% vs. 14.2% for > 10 medications), and lower current employment (18.3% vs. 83.8%). Compared to other benefit recipients, those with ME/CFS had lower hospitalisation (11.2% vs. 20.9%) and disability support service use (1.6% vs. 7.2%), but higher rates of Supported Living Payment (64.7% vs. 49.0%) and long-term benefit receipt. The ME/CFS cohort was disproportionately female and European, with notable underrepresentation of Māori, Pacific, and Asian ethnic groups.

Conclusions: People with ME/CFS on a benefit in NZ, while only representative of a small fraction of those affected by ME/CFS, still face substantial health burdens, economic vulnerability, and limited access to appropriate supports. The findings highlight systemic policy exclusions that disadvantage individuals with chronic, fluctuating conditions. Improved diagnostic coding, inclusive eligibility criteria, and integrated, person-centred care models are urgently needed to address inequities and support this underserved population.

Source: Bowden N, McLeod K, Anns F, Catchpole L, Charlton F, Taylor B, Vallings R, Vu H, Tate W. Health, labour market, and social service outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on a health or disability related benefit: an Aotearoa | New Zealand nationwide cross-sectional study using the integrated data infrastructure. BMC Public Health. 2026 Apr 24. doi: 10.1186/s12889-026-27499-7. Epub ahead of print. PMID: 42032509. https://link.springer.com/article/10.1186/s12889-026-27499-7 (Full text available as PDF file)

Long COVID disability burden in US adults

Abstract:

Background: Five years since the scientific and patient communities first identified the syndrome now known as Long COVID, affected individuals lack treatments, and the US lacks population-based data on its disability burden and correlation with National Institutes of Health (NIH) funding. Moreover, akin to other debilitating conditions it often co-occurs with, e.g., Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia, Long COVID disproportionately impacts females whose concerns are often marginalized.

Methods: We quantify Long COVID years lived with disability (YLDs= prevalence x disability weight) in US adults and its actual/YLD-commensurate average annual NIH FY2022-2024 funding versus 68 comparator conditions, by sex predominance. We derive Long COVID prevalence from Census Bureau surveys (9/2022-8/2023) and apply disability weights from the Global Burden of Disease Study.

Results: Long COVID YLDs approximate those of Alzheimer’s and Asthma. Long COVID received 14% of its disability commensurate funding: $106 million vs. $739.8 million. ME/CFS is the most under-funded condition, receiving <1% of its YLD proportionate funding. Among conditions analyzed, 24 are female-predominant (we estimate Long COVID funding two ways), 12 male-predominant, and 33 show no sex predominance. Among the 12 below-median funded/above-median YLD conditions, 7/12 are female-predominant, none are male-predominant. Median funding/per YLD is 5.2 times higher for male- vs. female-predominant conditions (7.0 vs 1.3 million per YLD, p = 0.007). Overall, YLDs explain 6.5% of funding variance in a linear regression model using YLD as the sole predictor (Adjusted R-squared: 0.065).

Conclusions: With chronic conditions like Long COVID rising, disability burden merits greater consideration in funding decisions, as does biological sex.

Source: Bonuck K, Gao Q, Congdon S, Kim RS. Long COVID disability burden in US adults. Commun Med (Lond). 2026 Mar 31;6(1):177. doi: 10.1038/s43856-026-01516-7. PMID: 41917225. https://www.nature.com/articles/s43856-026-01516-7 (Full text)

Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion-Based Neuroinflammation Imaging Study

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder with suspected neuroinflammatory pathophysiology. However, previous diffusion tensor imaging (DTI) studies have reported inconsistent white matter abnormalities in ME/CFS, and specific white matter inflammatory changes remain poorly characterised. This study employed an advanced diffusion-based neuroinflammation imaging (NII) model to investigate white matter neuroinflammation in ME/CFS.

Diffusion MRI data from 67 ME/CFS patients (median age, 38; and 54 women) and 67 rigorously matched healthy controls (HCs) (median age 38; and 52 women) were analysed. Seven NII-derived metrics were computed: hindered water ratio (NII-HR), restricted fraction (NII-RF), fibre fraction (NII-FF), axial diffusivity (NII-AD), radial diffusivity (NII-RD), mean diffusivity (NII-MD) and fractional anisotropy (NII-FA). Conventional DTI metrics were also calculated. Tract-based spatial statistics were used to perform voxel-wise group comparisons, and multiple regression analysis was conducted to examine the relationship between NII/DTI metrics and clinical measures of mental health, physical health, sleep quality, disability, disease severity and disease duration.

Compared to HCs, ME/CFS patients exhibited widespread white matter abnormalities, including significantly lower NII-HR and NII-RF, and significantly higher NII-FF, NII-AD, NII-MD and NII-FA across association, commissural and projection fibres. Additionally, some regions showed decreased NII-AD and NII-MD in ME/CFS. Lower NII-RF, NII-AD and NII-MD in ME/CFS were significantly associated with worse mental health, while lower NII-RF was also associated with a higher level of disability. Among ME/CFS patients, higher NII-FF was associated with lower disease severity. Conventional DTI showed minimal group differences and no significant clinical associations.

This study provides in vivo evidence of white matter neuroinflammation in ME/CFS, characterised by cerebral edema (reduced NII-HR), cellular infiltration (reduced NII-RF) and axonal reorganisation (increased NII-FF). This suggests NII-derived indices may serve as sensitive biomarkers for neuroinflammation in ME/CFS.

Source: Yu, Q., K.Kothe, R. A.Kwiatek, et al. 2026. “Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion-Based Neuroinflammation Imaging Study.” Human Brain Mapping47, no. 4: e70505. https://doi.org/10.1002/hbm.70505. https://onlinelibrary.wiley.com/doi/full/10.1002/hbm.70505 (Full text)

Symptom Patterns, Recovery, and Impact of Long COVID: Findings From a Longitudinal Survey

Abstract:

Background: Long COVID is a predominantly multisystem, often disabling, condition that develops following SARS-CoV-2 infection. We aimed to characterize the pattern, triggers, and impact of Long COVID symptoms.
Methods: Data from a 1-year follow-up of an online survey originally conducted in November 2020 were used. Surveys were coproduced with people living with Long COVID. Participants were adults with Long COVID following confirmed or probable SARS-CoV-2 infection who were not hospitalized in the first 2 weeks of illness. The baseline survey recruited from social media and online support groups using convenience nonprobability sampling.
Results: Of the 2210 first survey participants invited, 1153 (52%) responded to the follow-up survey. The mean age was 47.7 years (standard deviation 10.6) with 84% females, 83% UK-based, 78% university-qualified, and 90% reporting good to excellent health before SARS-CoV-2 infection. Median duration of illness was 19.8 months (interquartile range, 19.3–20.1) at follow-up. Only 5% of participants reported full recovery, and 45% reported a constant pattern of illness (as opposed to fluctuating or relapsing) compared to 17% at baseline. An equal proportion reported being unable to work at baseline (20.4%) and follow-up (20.6%). However, a higher proportion reported being made redundant or taking early retirement at follow-up (8.9%) than at baseline (2.2%).
Conclusions: This study highlights the prolonged nature of Long COVID as well as the impact on work. This has the potential to widen health inequalities and increase hardship in individuals whose life circumstances and job types may not allow them to make necessary adaptations.

Source: Nida Ziauddeen, Marija Pantelic, Margaret E O’Hara, Claire Hastie, Nisreen A Alwan, Symptom Patterns, Recovery, and Impact of Long COVID: Findings From a Longitudinal Survey, Open Forum Infectious Diseases, Volume 13, Issue 2, February 2026, ofag040, https://doi.org/10.1093/ofid/ofag040 https://academic.oup.com/ofid/article/13/2/ofag040/8495807?login=false (Full text)

Seeing is Believing: Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s and Quebec’s Social Benefits Tribunals

Abstract:

The phenomenon of disability skepticism, especially in relation to “hidden” disabilities like chronic fatigue syndrome (CFS), has fostered a culture of doubt among medical, legal, and public entities. This paper explores the intersection of such skepticism with the social benefits adjudication processes in Ontario and Quebec. In drawing parallels to feminist critiques of the “ideal victim” in sexual assault cases, it argues that the tribunals’ biased framework for believability is based on a claimant’s conformity to stereotypical expectations of what an “ideal” claimant with a hidden disability looks like.

By comparatively examining 10 years worth of Ontario and Quebec tribunal decisions featuring claimants with CFS, this study highlights how those with hidden disabilities are evaluated based on visible manifestations of their disability/emotion, medical/expert evidence, and the apparent credibility of themselves or others as witnesses. This research not only addresses a significant gap in the literature but also calls for reforms in the legal treatment of hidden disabilities, advocating for a shift away from entrenched stereotypes towards a more inclusive and equitable system.

Source: Pascale Malenfant, “Seeing is Believing: Identifying the ‘Ideal Manifestation of Hidden Disability’ in Ontario’s and Quebec’s Social Benefits Tribunals” (2026) 48:2 Dal LJ 753. https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/ (Full text available as PDF file)

The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS

Abstract:

The British National Institute for Health and Care Excellence (NICE) published its updated guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in October 2021. NICE concluded, after an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment. An article by White et al., which is written by 51 researchers, claims that there are eight anomalies in the review process and the interpretation of the evidence by NICE. In this article, we reviewed the evidence they used to support their claims.

Their three most important claims are that NICE redefined the disease, that CBT and GET are effective, and that fixed incremental increases are not part of GET. However, our analysis shows that the disease was not redefined by NICE. Instead, it was redefined in the 1990s by a group of doctors, including a number of authors of White et al., when they erased the main characteristic of the disease (an abnormally delayed muscle recovery after trivial exertion, which, over the years, has evolved into post-exertional malaise) and replaced it with chronic disabling severe fatigue. Their own studies show that CBT and GET do not lead to a substantial improvement of the quality-of-life scores or a reduction in CFS symptom count, nor do they lead to objective improvement.

Also, both treatments have a negative instead of a positive effect on work and disability status. Moreover, a recent systematic review, which included one of the authors of White et al., showed that ME/CFS patients remain severely disabled after treatment with CBT. Our analysis of, for example, the PACE trial’s GET manual for therapists exposes the fixed incremental nature of GET.

Why the authors are not aware of that is unclear because eight of them were involved in the PACE trial. Three of them were centre leaders and its principal investigators, four others were also centre leaders, and another one was one of the three independent safety assessors of the trial. Moreover, many of these eight authors wrote, or were involved in writing, this manual.

In conclusion, our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and highlight the absence of evidence for the claims that are made. Furthermore, our analysis not only exposes the fixed incremental nature of GET, but also of CBT for ME/CFS.

Source:Vink M, Partyka-Vink K. The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS. Life (Basel). 2025 Apr 2;15(4):584. doi: 10.3390/life15040584. PMID: 40283139. https://www.mdpi.com/2075-1729/15/4/584 (Full text)

What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?

Highlights:

•The article used public register data to assess the prognosis of G93.3 patients.
•Patient wages started declining around 3 years before the G93.3 diagnosis.
•Dependency on public transfers had started to increase 7 years before diagnosis.
•Less than 6% maintained an income of at least median wages after diagnosis.
•Very few moved from no or very low wage incomes to median wages.

Abstract:

Prognoses for persons affected by myalgic encephalomyelitis (ME) are rarely studied systematically. Existing studies are often based on smaller samples with unclear inclusion and subjective outcome criteria, and few look at wages as indicators of illness trajectories. This article considers how ME affects the wages and dependency on public transfers of people affected over time, especially in the period when the welfare authorities investigate eligibility for disability pension.
We matched Norwegian population register data on 8485 working-age individuals diagnosed with G93.3 (postviral fatigue syndrome) from 2009 to 2018 with wage and transfer data and compared male and female cases to control groups. The G93.3 population’s wages fell sharply from around 3 years before diagnosis to 1 year after and stabilized at a low level. Public transfers started increasing several years before diagnosis and stabilized at a high level after.
Few of those making no or very low income around the time of the diagnosis resumed earning moderate wages, and only exceptional cases returned to wages corresponding to median wages.
Source: Anne Kielland, Jing Liu. What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis? Social Sciences & Humanities Open. Volume 11, 2025, 101206. https://www.sciencedirect.com/science/article/pii/S2590291124004030 (Full text)

Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID

Abstract:

The UK government’s recent announcement that the highly controversial Work Capability Assessment (WCA) will likely be abolished leaves questions of what precisely will emerge in its place. This commentary revisits a construct central to the attempted justification of the WCA, that of ‘common health problems’, which may well continue to leave a legacy in delineating purported ‘deserving’ and ‘undeserving’ impairment, ill-health and related disability. After outlining the politically strategic application of this construct in social policy, concerns are raised for long Covid. In particular, the risk of long Covid following the trajectory of another post-infection diagnosis, myalgic encephalomyelitis / chronic fatigue syndrome, is discussed.
Source: Hunt, J. (2024). Inheriting discriminatory  socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID. Critical Social Policy, 0(0). https://doi.org/10.1177/02610183241229050 https://journals.sagepub.com/doi/10.1177/02610183241229050 (Full text)

Post-acute COVID-19 complications in UK doctors: results of a cross-sectional survey

Abstract:

Background: As a consequence of their occupation, doctors and other healthcare workers were at higher risk of contracting coronavirus disease 2019 (COVID-19), and more likely to experience severe disease compared to the general population. However, systematic information on post-acute COVID complications in doctors is very limited.

Aims: This study aimed to determine the symptoms, perceived determinants, health and occupational impact, and consequent needs relating to post-acute COVID complications in UK doctors.

Methods: An online cross-sectional survey was distributed to UK doctors self-identifying as having Long COVID or other post-acute COVID complications.

Results: Of 795 responses, 603 fulfilled the inclusion criteria of being a UK-based medical doctor experiencing one or more post-acute COVID complications. Twenty-eight per cent reported a lack of adequate Respiratory Protective Equipment at the time of contracting COVID-19. Eighteen per cent of eligible respondents reported that they had been unable to return to work since acquiring COVID.

Conclusions: Post-acute COVID (Long COVID) in UK doctors is a substantial burden for respondents to our questionnaire. The results indicated that insufficient respiratory protection could have contributed to occupational disease, with COVID-19 being contracted in the workplace, and resultant post-COVID complications. Although it may be too late to address the perceived determinants of inadequate protection for those already suffering with Long COVID, more investment is needed in rehabilitation and support of those afflicted.

Source: D Bland, R Evans, A Binesmael, S Wood, S P Qureshi, K Fearnley, A Small, W D Strain, R Agius, Post-acute COVID-19 complications in UK doctors: results of a cross-sectional survey, Occupational Medicine, 2023;, kqad120, https://doi.org/10.1093/occmed/kqad120 https://academic.oup.com/occmed/advance-article-abstract/doi/10.1093/occmed/kqad120/7468904?redirectedFrom=fulltext