Tag: public health

A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study

Abstract:

Background: In chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), the capacity for activity and participation is strongly limited. The disease definition is very broad, and considering the lack of evidence for best treatment, it is important to understand what is ME/CFS-specific in the biopsychosocial perspective in comparison with similar syndromes. The objective was to study the difference between those diagnosed with ME/CFS and those with similar symptoms but no ME/CFS diagnosis for self-perceived level of physical activity, work ability, anxiety/depression, and health-related quality of life.

Methods: This was a clinical cross-sectional study with data collected from mailed questionnaires. The following variables were compared between patients diagnosed with ME/CFS (n = 205) and those with similar symptoms but no diagnosis (n = 57); level of physical activity, Work ability index (WAI), Hospital anxiety and depression scale (HAD-A/HAD-D), and RAND-36 Physical functioning, Role limitations due to physical health problems, Role limitations due to personal or emotional problems, Social functioning, Energy/fatigue, Bodily pain, Emotional well-being, and General health perceptions. The Chi-squared test (nominal data), the Mann-Whitney U test, the Student’s t test and regression analysis were used to analyze the data.

Results: The group diagnosed with ME/CFS had a more impaired physical and mental exertion ability as compared to the group that had similar symptoms but was not diagnosed with ME/CFS, shown by a RAND-36 lower index of physical role functioning, social functioning, energy, worse pain and poorer overall health (p ≤ 0.05). In contrast, no significant group differences emerged for weekly level of physical activity, work ability, anxiety/depression, and RAND-36 Emotional role limitation and well-being.

Conclusion: Our results indicate that those with a diagnosis of ME/CFS are characterized by an impaired ability for physical or mental exertion, worse pain, and poorer overall health as compared to individuals with similar symptoms but for whom ME/CFS-diagnosis was not established. The results may be cautiously interpreted as support when focusing on patients’ self-care in terms of management of energy levels. The results must however be verified in future studies.

Source: Bernhoff G, Rasmussen-Barr E, Bunketorp Käll L. A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study. J Transl Med. 2022 Dec 9;20(1):577. doi: 10.1186/s12967-022-03769-x. PMID: 36494693; PMCID: PMC9733040. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03769-x (Full text)

Clinical, sociodemographic and environmental factors impact post-COVID-19 syndrome

Abstract:

Background: Sociodemographic and environmental factors are associated with incidence, severity, and mortality of COVID-19. However, little is known about the role of such factors in persisting symptoms among recovering patients. We designed a cohort study of hospitalized COVID-19 survivors to describe persistent symptoms and identify factors associated with post-COVID-19 syndrome.

Methods: We included patients hospitalized between March to August 2020 who were alive six months after hospitalization. We collected individual and clinical characteristics during hospitalization and at follow-up assessed ten symptoms with standardized scales, 19 yes/no symptoms, a functional status and a quality-of-life scale and performed four clinical tests. We examined individual exposure to greenspace and air pollution and considered neighbourhood´s population density and socioeconomic conditions as contextual factors in multilevel regression analysis.

Results: We included 749 patients with a median follow-up of 200 (IQR = 185-235) days, and 618 (83%) had at least one of the ten symptoms measured with scales. Pain (41%), fatigue (38%) and posttraumatic stress disorder (35%) were the most frequent. COVID-19 severity, comorbidities, BMI, female sex, younger age, and low socioeconomic position were associated with different symptoms. Exposure to ambient air pollution was associated with higher dyspnoea and fatigue scores and lower functional status.

Conclusions: We identified a high frequency of persistent symptoms among COVID-19 survivors that were associated with clinical, sociodemographic, and environmental variables. These findings indicate that most patients recovering from COVID-19 will need post-discharge care, and an additional burden to health care systems, especially in LMICs, should be expected.

Source: Ferreira JC, Moreira TCL, de Araújo AL, Imamura M, Damiano RF, Garcia ML, Sawamura MV, Pinna FR, Guedes BF, Gonçalves FAR, Mancini M, Burdmann EA, da Silva Filho DF, Polizel JL, Bento RF, Rocha V, Nitrini R, de Souza HP, Levin AS, Kallas EG, Forlenza OV, Busatto GF, Batistella LR, de Carvalho CRR, Mauad T, Gouveia N; HCFMUSP COVID-19 Study Group. Clinical, sociodemographic and environmental factors impact post-COVID-19 syndrome. J Glob Health. 2022 Aug 9;12:05029. doi: 10.7189/jogh.12.05029. PMID: 35939273. https://jogh.org/2022/jogh-12-05029 (Full text)

Chronic fatigue syndrome: an old public health issue highlighted by the COVID-19 pandemic

In some cases, C O VID-19 has been shown to cause both acute as well as prolonged neuropsychiatric manifestations, possibly due to CNS immune cell activation.13,14 Between 13 and 23% of hospitalized COVID-19 patients suffer from fatigue and PEM-like symptoms more than 6 months after the infection.15 These numbers, although alarming, are hardly surprising. Looking back at the 2002/03 SARS pandemic, a similar proportion of hospitalized patients with a severe course also developed CFS/ME (27% of survivors 4 years after hospitalisation).16Other common pathogens that can lead to CFS/ME include viruses like Epstein-Barr virus (EBV), cytomegalovirus (CMV) and enteroviruses, bacteria such as mycoplasma, Borrelia burgdorferi (Lyme disease), and Coxiella burnetii (Q fever).17 In fact, in 3 out of 4 cases of CFS/ME, the disease develops following an infectious episode.18 Interestingly, the innate immune response to infections is generally higher among women than men, which could perhaps also explain the higher prevalence of CFS/ME among women given the role that immunity plays in it. With an estimated prevalence of 0.1-0.7%, CFS/ME is far above the threshold value set by the European Union for classification as a rare disease (<5:10,000).

Read the rest of this article HERE. 

Source: Bonk JS, Khedkar PH. Chronic fatigue syndrome: an old public health issue highlighted by the COVID-19 pandemic. Acta Physiol (Oxf). 2022 Jul 30:e13863. doi: 10.1111/apha.13863. Epub ahead of print. PMID: 35906837. https://onlinelibrary.wiley.com/doi/epdf/10.1111/apha.13863 (Full text)

LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK

Abstract:

Introduction: Long COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services. We seek to optimise long COVID care both within and outside specialist clinics, including improving access, reducing inequalities, helping self-management and providing guidance and decision support for primary care. We aim to establish a ‘gold standard’ of care by systematically analysing current practices, iteratively improving pathways and systems of care.

Methods and analysis: This mixed-methods, multisite study is informed by the principles of applied health services research, quality improvement, co-design, outcome measurement and learning health systems. It was developed in close partnership with patients (whose stated priorities are prompt clinical assessment; evidence-based advice and treatment and help with returning to work and other roles) and with front-line clinicians. Workstreams and tasks to optimise assessment, treatment and monitoring are based in three contrasting settings: workstream 1 (qualitative research, up to 100 participants), specialist management in 10 long COVID clinics across the UK, via a quality improvement collaborative, experience-based co-design and targeted efforts to reduce inequalities of access, return to work and peer support; workstream 2 (quantitative research, up to 5000 participants), patient self-management at home, technology-supported monitoring and validation of condition-specific outcome measures and workstream 3 (quantitative research, up to 5000 participants), generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and analysis of costs. Study governance includes an active patient advisory group.

Ethics and dissemination: LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber-Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Participants will provide informed consent. Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers.

Source: Sivan M, Greenhalgh T, Darbyshire JL, Mir G, O’Connor RJ, Dawes H, Greenwood D, O’Connor D, Horton M, Petrou S, de Lusignan S, Curcin V, Mayer E, Casson A, Milne R, Rayner C, Smith N, Parkin A, Preston N, Delaney B; LOCOMOTION consortium. LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK. BMJ Open. 2022 May 17;12(5):e063505. doi: 10.1136/bmjopen-2022-063505. PMID: 35580970; PMCID: PMC9114312. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9114312/ (Full text)

Long-COVID: A growing problem in need of intervention

Summary:

The number of people who have survived COVID-19 is overwhelming – official figures approach half a billion (https://covid19.who.int). Thus, any long-term consequences in COVID-19 survivors could have a huge impact on public health and on healthcare services in the coming months and years, with potentially 100 million individuals affected.

Source: Bjørn Blomberg, Rebecca Jane Cox, Nina Langeland. Long-COVID: A growing problem in need of intervention. Cell Reports Medicine, 2022, 100552, ISSN 2666-3791. https://doi.org/10.1016/j.xcrm.2022.100552. (Full text)

Recognising and bearing the burden of long COVID-related disability

Long COVID is nicely discussed by Burke and del Rio in a short article in Lancet Infectious Diseases .1 The UK is world leading in having two large, high-quality prevalence studies of COVID-19 in the ONS Infection Survey2 and REACT3 (but this advantage is thrown away when politicians ignore the findings).

The ONS infection survey has strong design, and estimates 1.3% or 862 000 people with long COVID symptoms persisting for more than 12 weeks, including 0.26% or 177 000 reporting daily activities limited a lot, with 98 000 of these being first infected more than a year ago.2 REACT also found a high prevalence of persistent symptoms.3 This represents a large burden of disability for individuals, their supporters, and the economy, with GPs on the frontline. Yes, this is self-reported survey data, but the ONS measure of activity restriction is academically respectable.4 Focusing on activity restriction captures severity and impact, and sidesteps issues with symptom lists while long COVID remains poorly understood. Corroboration is required, and, with political will, these numbers could be cross-checked with routine data such as school and work absences in a matter of weeks.

Read the rest of this article HERE.

Source: Spiers N. Recognising and bearing the burden of long COVID-related disability. Br J Gen Pract. 2022 Jan 27;72(715):70. doi: 10.3399/bjgp22X718361. PMID: 35091402. https://bjgp.org/content/72/715/85.full (Full text)

Covid-19: How Europe is approaching long covid

Maarte Preller leads a Facebook group for patients with long covid in Austria. It has nearly 1500 members so far. In September, Preller, and others like her across Europe, established a new network of patient associations, formed partly through social media websites, called Long Covid Europe. The group is demanding better research and treatment for the tangle of ongoing symptoms that afflict many people who have had covid-19.

A patchwork of small studies has given some indication of what long covid on the continent is like. In a study of 130 cases, 40% of patients reported “persistent fatigue” 60 days after their first symptoms, while 30% reported breathlessness. Another, of 143 patients in Italy, revealed 55% had three or more symptoms 60 days after they were discharged from hospital.1

A preprint posted in January 2022 of an ongoing study of 70 000 Norwegian patients listed altered smell or taste, poor memory, fatigue, and shortness of breath as common symptoms in the country’s first wave (in early 2021), while those infected from autumn 2021 onwards tended to mention muscle and joint pain more. The data suggest that symptoms were experienced for 11-12 months after infection in the first wave and for one to two months in the second.2

A World Health Organization policy brief published earlier this year found that surveillance of long covid was not happening routinely in European countries.1 There are few specialist clinics for the condition—access to such a service largely depends on where you live—and in many countries action seems to be limited to guidance and monitoring.

Read the rest of this article HERE.

Source: Baraniuk C. Covid-19: How Europe is approaching long covid. BMJ. 2022 Jan 20;376:o158. doi: 10.1136/bmj.o158. PMID: 35058230. https://www.bmj.com/content/376/bmj.o158.full (Full text)

Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective-In Light of COVID-19

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood, complex, multisystem disorder, with severe fatigue not alleviated by rest, and other symptoms, which lead to substantial reductions in functional activity and quality of life. Due to the unclear aetiology, treatment of patients is complicated, but one of the initial problems is the insufficient diagnostic process. The increase in the number of undiagnosed ME/CFS patients became specifically relevant in the light of the COVID-19 pandemic. The aim of this research was to investigate the issues of undiagnosed potential ME/CFS patients, with a hypothetical forecast of the expansion of post-viral CFS as a consequence of COVID-19 and its burden on society.

Methods: The theoretical research was founded on the estimation of classic factors presumably affecting the diagnostic scope of ME/CFS and their ascription to Latvian circumstances, as well as a literature review to assess the potential interaction between ME/CFS and COVID-19 as a new contributing agent. The empirical study design consisted of two parts: The first part was dedicated to a comparison of the self-reported data of ME/CFS patients with those of persons experiencing symptoms similar to ME/CFS, but without a diagnosis. This part envisaged the creation of an assumption of the ME/CFS shadow burden “status quo”, not addressing the impact of COVID-19. The second part aimed to investigate data from former COVID-19 patients’ surveys on the presence of ME/CFS symptoms, 6 months after being affected by COVID-19. Descriptive and analytical statistical methods were used to analyse the obtained data.

Results: The received data assumed that the previously obtained data on the ME/CFS prevalence of 0.8% in the Latvian population are appropriate, and the literature review reports a prevalence of 0.2-1.0% in developed countries. Regarding the reciprocity of ME/CFS and COVID-19, the literature review showed a lack of research in this field. The empirical results show quite similar self-esteem among ME/CFS patients and undiagnosed patients with longstanding disease experience, while former COVID-19 patients show a significantly lower severity of these problems. Notably, “psychological distress (anxiety)” and “episodic fatigue” are significantly predominant symptoms reported by former COVID-19 patients in comparison with ME/CFS patients and undiagnosed patients prior to the COVID-19 pandemic. The results of our analysis predict that the total amount of direct medical costs for undiagnosed patients (out-of-pocket payments) is more than EUR 15 million p.a. (in Latvia), and this may increase by at least 15% due to the consequences of COVID-19.

Conclusions: ME/CFS creates a significant shadow burden on society, even considering only the direct medical costs of undiagnosed patients-the number of whom in Latvia is probably at least five times higher than the number of discerned patients. Simultaneously, COVID-19 can induce long-lasting complications and chronic conditions, such as post-viral CFS, and increase this burden. The Latvian research data assume that ME/CFS patients are not a high-risk group for COVID-19; however, COVID-19 causes ME/CFS-relevant symptoms in patients. This increases the need for monitoring of patients for even longer after recovering from COVID-19’s symptoms, in order to prevent complications and the progression of chronic diseases. In the context of further epidemiological uncertainty, and the possibility of severe post-viral consequences, preventive measures are becoming significantly more important; an integrated diagnostic approach and appropriate treatment could reduce this burden in the future.

Source: Araja D, Berkis U, Lunga A, Murovska M. Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective-In Light of COVID-19. J Clin Med. 2021 Jul 6;10(14):3017. doi: 10.3390/jcm10143017. PMID: 34300183. https://pubmed.ncbi.nlm.nih.gov/34300183/

Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience

Abstract:

BACKGROUND: Doctors are called upon to treat chronic debilitating fatigue without the help of a protocol of care.

AIMS: To estimate the incidence of chronic debilitating fatigue in Irish general practice, to obtain information on management strategy and outcome, to explore the attitudes of practitioners (GPs) towards the concept of a chronic fatigue syndrome (CFS), and to recruit practitioners to a prospective study of chronic fatigue in primary care.

METHOD: A total of 200 names were selected from the database of the Irish College of General Practitioners (ICGP); 164 of these were eligible for the study.

RESULTS: Altogether, 118 questionnaires were returned (72%). Ninety-two (78%) responders identified cases of chronic fatigue, giving an estimated 2.1 cases per practice and an incidence of 1 per 1000 population. All social classes were represented, with a male to female ratio of 1:2. Eleven disparate approaches to treatment were advocated. Many (38%) were dissatisfied with the quality of care delivered, and 45% seldom or hardly ever referred cases for specialist opinion. The majority (58%) accepted CFS as a distinct entity, 34% were undecided, and 8% rejected it. Forty-two (35%) GPs volunteered for a prospective study.

CONCLUSION: Chronic fatigue is found in Irish general practice among patients of both sexes and all social classes. Doctors differ considerably in their management of patients and are dissatisfied with the quality of care they deliver. Many cases are not referred for specialist opinion. A prospective database is required to accurately assess the scale of this public health problem and to develop a protocol of care.

 

Source: Fitzgibbon EJ, Murphy D, O’Shea K, Kelleher C. Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience. Br J Gen Pract. 1997 Oct;47(423):618-22. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1410094/ (Full article)

 

‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis

Abstract:

BACKGROUND: Myalgic encephalomyelitis (ME) is a mysterious and controversial condition. Debate has centred upon its causation, and the purchasing question-which services to commission for people with ME-has not been addressed.

METHODS: A health needs assessment was made of people with ME in Wakefield, based upon published (including grey) literature, and local informants.

RESULTS: Previous studies have mostly reflected institutional outbreaks; local needs will reflect community, sporadic cases but there is little information about these. The very wide estimates of prevalence (between zero and 57000 for a district the size of Wakefield) indicate a fundamental problem over the validity of the concept of ME. Four sets of health needs emerged from the literature and from local informants: a medical diagnosis, rest, specific treatments and social care. All four are highly debatable.

CONCLUSION: There are no proven services or interventions which the health authority should purchase for people with ME. Purchasing, being a blunt tool for service change, is unlikely to improve health care given the disagreements over the condition.

 

Source: Sutton GC. ‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis. J Public Health Med. 1996 Sep;18(3):343-9. http://jpubhealth.oxfordjournals.org/content/18/3/343.long (Full article)