Tag: disability

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

Evaluation of Post–COVID-19 Cognitive Dysfunction: Recommendations for Researchers

Opinion:

SARS-CoV-2 infection is associated with increased rates of postillness cognitive dysfunction, colloquially referred to as “brain fog,”1 that may portend significant consequences for patient functioning and quality of life. Post–COVID-19 cognitive dysfunction is 1 of approximately 200 symptoms of post–COVID-19 condition (PCC), defined by the World Health Organization as developing within 3 months of an initial SARS-CoV-2 infection, lasting at least 2 months, and cannot be explained by an alternative diagnosis. A pooled analysis of 54 studies and 1.2 million individuals found that 3.2% of patients’ self-reported cognitive problems 3 months after symptomatic infection,1 while other studies have shown objective evidence of cognitive dysfunction in approximately 24% of patients nearly 1 year later.2 Accumulating evidence also supports the hypothesis that COVID-19 may increase risk for later neurodegeneration3 and exacerbate preexisting cognitive dysfunction.4 As one of the most common symptoms of PCC and one for which affected individuals may seek accommodations and disability benefits in accordance with the Americans With Disabilities Act, it is imperative that we use more rigorous studies of cognitive outcomes. Accordingly, the following recommendations have been generated by members of the NeuroCOVID International Neuropsychology Taskforce based on initial guidelines.5

Source: Jaqueline H. Becker, PhD; Tracy D. Vannorsdall, PhD; Sara L. Weisenbach, PhD. JAMA Psychiatry. Published online August 16, 2023. doi:10.1001/jamapsychiatry.2023.2820 https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2808155

Long COVID as a chronic illness: giving credibility to support students

Abstract:

The SARS-CoV-2 virus continues to account for millions of short- and long-term conditions that can impact an individual’s cognition, breathing, and digestion. Specifically, Long COVID creates long-term health problems, diagnosable if COVID-19 symptoms present after an initial infection. Approximately 15% of U.S. adults with a prior positive COVID-19 diagnosis experience Long COVID symptoms. (See Roy H. Perlis, et al, Prevalence and Correlates of Long COVID Symptoms Among US Adults, 5 JAMA NETW OPEN 10 (October 27, 2022).) Long COVID is plaguing individuals’ ability to return to their typical functioning, including their ability to return to work. (See Katie Bach, New Data Shows Long Covid Is Keeping as Many as 4 Million People Out of Work, BROOKINGS INSTITUTE (August 24, 2022) (https://brook.gs/3xktTkC).)

Source: Aquino, K.C., Jarrow, J., Vance, L. and Rei-Skoff, A.E. (2023), Long COVID as a chronic illness: giving credibility to support students. Disability Compliance for Higher Education, 28: 1-4. https://doi.org/10.1002/dhe.31478

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study

Abstract:

Introduction: Our aim was to describe episodic nature of disability among adults living with Long COVID.

Methods: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA. We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis.

Results: Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with ‘ups and downs’, ‘flare-ups’ and ‘peaks’ followed by ‘crashes’, ‘troughs’ and ‘valleys’, likened to a ‘yo-yo’, ‘rolling hills’ and ‘rollercoaster ride’ with ‘relapsing/remitting’, ‘waxing/waning’, ‘fluctuations’ in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.

Conclusion: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

Source: O’Brien KK, Brown DA, McDuff K, St Clair-Sullivan N, Solomon P, Chan Carusone S, McCorkell L, Wei H, Goulding S, O’Hara M, Thomson C, Roche N, Stokes R, Vera JH, Erlandson KM, Bergin C, Robinson L, Cheung AM, Torres B, Avery L, Bannan C, Harding R. Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study. BMJ Glob Health. 2023 Mar;8(3):e011276. doi: 10.1136/bmjgh-2022-011276. PMID: 36863719; PMCID: PMC9979585. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9979585/ (Full text)

Post-COVID conditions and healthcare utilization among adults with and without disabilities-2021 Porter Novelli FallStyles survey

Abstract:

Background: Adults with disabilities are at increased risk for SARS-CoV-2 infection and severe disease; whether adults with disabilities are at an increased risk for ongoing symptoms after acute SARS-CoV-2 infection is unknown.

Objectives: To estimate the frequency and duration of long-term symptoms (>4 weeks) and health care utilization among adults with and without disabilities who self-report positive or negative SARS-CoV-2 test results.

Methods: Data from a nationwide survey of 4510 U.S. adults administered from September 24, 2021-October 7, 2021, were analyzed for 3251 (79%) participants who self-reported disability status, symptom(s), and SARS-CoV-2 test results (a positive test or only negative tests). Multivariable models were used to estimate the odds of having ≥1 COVID-19-like symptom(s) lasting >4 weeks by test result and disability status, weighted and adjusted for socio-demographics.

Results: Respondents who tested positive for SARS-CoV-2 had higher odds of reporting ≥1 long-term symptom (with disability: aOR = 4.50 [95% CI: 2.37, 8.54] and without disability: aOR = 9.88 [95% CI: 7.13, 13.71]) compared to respondents testing negative. Among respondents who tested positive, those with disabilities were not significantly more likely to experience long-term symptoms compared to respondents without disabilities (aOR = 1.65 [95% CI: 0.78, 3.50]). Health care utilization for reported symptoms was higher among respondents with disabilities who tested positive (40%) than among respondents without disabilities who tested positive (18%).

Conclusions: Ongoing symptoms among adults with and without disabilities who also test positive for SARS-CoV-2 are common; however, the frequency of health care utilization for ongoing symptoms is two-fold among adults with disabilities.

Source: Miller MJ, Feldstein LR, Holbrook J, Plumb ID, Accorsi EK, Zhang QC, Cheng Q, Ko JY, Wanga V, Konkle S, Dimitrov LV, Bertolli J, Saydah S. Post-COVID conditions and healthcare utilization among adults with and without disabilities-2021 Porter Novelli FallStyles survey. Disabil Health J. 2022 Dec 19:101436. doi: 10.1016/j.dhjo.2022.101436. Epub ahead of print. PMID: 36740547; PMCID: PMC9762038. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9762038/ (Full text)