Unequal access to diagnosis of myalgic encephalomyelitis in England

Abstract:

Background People with Myalgic Encephalomyelitis (ME/CFS; sometimes referred to as chronic fatigue syndrome) experience very poor health-related quality of life and only rarely recover. ME/CFS has no curative treatment and no single diagnostic test. Public health and policy decisions relevant to ME/CFS require knowledge of its prevalence and barriers to diagnosis. However, people with ME/CFS report lengthy diagnostic delays and widespread misunderstanding of their symptoms. Published prevalence estimates vary greatly by country, gender, age and ethnicity.

Methods Hospital Episode Statistics data is routinely collected by the NHS in England together with patient age, gender and ethnicity. This data, downloaded from the Feasibility Self-Service of NHS DigiTrials, was used to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3; “Postviral fatigue syndrome”) according to their age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB).

Results In all, 100,055 people in England had been diagnosed with ME/CFS (ICD-10:G93.3) between April 1 1989 and October 7 2023, 0.16% of all registered patients. Of these, 79,445 were females and 20,590 males, a female-to-male ratio of 3.88:1. Female relative to male prevalence peaked at about 6-to-1 in individuals’ fourth and fifth decades of life. Prevalence varied widely across the 42 ICBs: 0.086%-0.82% for females and 0.024%-0.21% for males. White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS than others; black, Asian or Chinese ethnicities are associated with particularly low rates of ME/CFS diagnoses. This ethnicity bias is stronger than for other common diseases. Among active English GP practices, 176 (3%) had no registered ME/CFS patients. Eight ICBs (19%) each contained fewer than 8 other-than-white individuals with a G93.3 code despite their registers containing a total of 293,770 other-than-white patients.

Conclusion Those who are disproportionately undiagnosed with ME/CFS are other-than-white ethnic groups, older females (>60y), older males (>80y), and people living in areas of multiple deprivation. The lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall. This improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS.

Source: Gemma L. Samms, Chris P. Ponting. Unequal access to diagnosis of myalgic encephalomyelitis in England. medRxiv 2024.01.31.24302070; doi: https://doi.org/10.1101/2024.01.31.24302070 https://www.medrxiv.org/content/10.1101/2024.01.31.24302070v1.full-text (Full text)

Severe mental illness, race/ethnicity, multimorbidity and mortality following COVID-19 infection: nationally representative cohort study

Abstract:

Background: The association of COVID-19 with death in people with severe mental illness (SMI), and associations with multimorbidity and ethnicity, are unclear.

Aims: To determine all-cause mortality in people with SMI following COVID-19 infection, and assess whether excess mortality is affected by multimorbidity or ethnicity.

Method: This was a retrospective cohort study using primary care data from the Clinical Practice Research Database, from February 2020 to April 2021. Cox proportional hazards regression was used to estimate the effect of SMI on all-cause mortality during the first two waves of the COVID-19 pandemic.

Results: Among 7146 people with SMI (56% female), there was a higher prevalence of multimorbidity compared with the non-SMI control group (n = 653 024, 55% female). Following COVID-19 infection, the SMI group experienced a greater risk of death compared with controls (adjusted hazard ratio (aHR) 1.53, 95% CI 1.39-1.68). Black Caribbean/Black African people were more likely to die from COVID-19 compared with White people (aHR = 1.22, 95% CI 1.12-1.34), with similar associations in the SMI group and non-SMI group (P for interaction = 0.73). Following infection with COVID-19, for every additional multimorbidity condition, the aHR for death was 1.06 (95% CI 1.01-1.10) in the SMI stratum and 1.16 (95% CI 1.15-1.17) in the non-SMI stratum (P for interaction = 0.001).

Conclusions: Following COVID-19 infection, patients with SMI were at an elevated risk of death, further magnified by multimorbidity. Black Caribbean/Black African people had a higher risk of death from COVID-19 than White people, and this inequity was similar for the SMI group and the control group.

Source: Das-Munshi J, Bakolis I, Bécares L, Dyer J, Hotopf M, Ocloo J, Stewart R, Stuart R, Dregan A. Severe mental illness, race/ethnicity, multimorbidity and mortality following COVID-19 infection: nationally representative cohort study. Br J Psychiatry. 2023 Nov;223(5):518-525. doi: 10.1192/bjp.2023.112. PMID: 37876350; PMCID: PMC7615273. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7615273/ (Full text)

Nirmatrelvir/ritonavir and risk of long COVID symptoms: a retrospective cohort study

Abstract:

We conducted a retrospective cohort study to assess whether treatment with nirmatrelvir/ritonavir was associated with a reduced risk of long COVID. We enrolled 500 adults with confirmed SARS-CoV-2 who were eligible for nirmatrelvir/ritonavir; 250 who took nirmatrelvir/ritonavir and 250 who did not. The primary outcome was the development of one or more of eleven prespecified long COVID symptoms, assessed through a structured telephone interview four months after the positive SARS-CoV-2 test. Multivariable logistic regression models controlled for age, sex, race/ethnicity, chronic conditions, and COVID-19 vaccination status.

We found that participants who took nirmatrelvir/ritonavir were no less likely to develop long COVID symptoms, compared to those who did not take the medication (44% vs. 49.6%, p = 0.21). Taking nirmatrelvir/ritonavir was associated with a lower odds of two of the eleven long COVID symptoms, brain fog (OR 0.58, 95% CI 0.38-0.88) and chest pain/tightness (OR 0.51, 95% CI 0.28-0.91). Our finding that treatment with nirmatrelvir/ritonavir was not associated with a lower risk of developing long COVID is different from prior studies that obtained data only from electronic medical records.

Source: Congdon S, Narrowe Z, Yone N, Gunn J, Deng Y, Nori P, Cowman K, Islam M, Rikin S, Starrels J. Nirmatrelvir/ritonavir and risk of long COVID symptoms: a retrospective cohort study. Sci Rep. 2023 Nov 11;13(1):19688. doi: 10.1038/s41598-023-46912-4. PMID: 37951998; PMCID: PMC10640584. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10640584/ (Full text)

The Prevalence of Psychiatric Symptoms and their correlates as part of the Long-Covid Syndrome.

Abstract:

The Long COVID syndrome has now been documented clearly in the literature, but whether or not psychiatric symptoms are prominent is unclear. We performed a retrospective chart review of all patients receiving medical care during the pandemic in an outpatient Long-COVID specialty clinic that serves a large racial and ethnic minority population. As many as 44% of patients had symptoms that necessitated referrals to psychiatrists, predominantly depression or anxiety. Spanish speaking patients had greater COVID severity (48%) than did predominantly English speakers (15%). We conclude that the long COVID syndrome is predominantly a cluster of physical symptoms that are sequelae of the viral infection.

Source: Clifton Chow, Will Schleyer, Lynn E DeLisi. The Prevalence of Psychiatric Symptoms and their correlates as part of the Long-Covid Syndrome. Psychiatry Research, 2023, 115166, ISSN 0165-1781, https://doi.org/10.1016/j.psychres.2023.115166. https://www.sciencedirect.com/science/article/pii/S0165178123001178

Differences in Symptoms among Black and White Patients with ME/CFS

Abstract:

Study samples of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have primarily involved White subjects, so the literature on ethnic differences is sparse. The current study identified a sample of 19 Black patients diagnosed with ME/CFS and compared them with White patients with ME/CFS, as well as with healthy controls. The studies used a similar psychometrically sound assessment tool to assess symptoms in all subjects.

Findings indicated there were significant differences between patients with ME/CFS versus controls, but few differences between patients who identified as Black or White. The results suggest there might be few symptom differences between patients with ME/CFS in these two ethnic groups. The implications of these findings are discussed.

Source: Jason LA, Torres C. Differences in Symptoms among Black and White Patients with ME/CFS. J Clin Med. 2022 Nov 12;11(22):6708. doi: 10.3390/jcm11226708. PMID: 36431185. https://www.mdpi.com/2077-0383/11/22/6708 (Full text)