Focus on Post-Exertional Malaise when approaching ME/CFS in specialist healthcare improves satisfaction and reduces deteriorations

Abstract:

Background: Post-Exertional Malaise (PEM) is considered a hallmark characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine specialist healthcare for ME/CFS patients, and how this affects patient outcomes.

Objective: This study aims to evaluate to what extent ME/CFS patients experienced focus on PEM in specialist healthcare practice and its significance for outcome and care quality.

Methods: Data from two online cross-sectional surveys covering specialist healthcare services for ME/CFS patients at rehabilitation institutes in Norway and at two regional hospitals respectively, were analyzed. Evaluations of 788 rehabilitation stays, 86 hospital consultations and 89 hospital interventions were included.

Logistic regression models and Mann-Whitney U tests were used to quantify the impact of addressing PEM on health and functioning, care satisfaction or benefit. Spearman’s rank correlation and Cronbach’s alpha of focus on PEM with the respondents’ perception of healthcare providers’ knowledge, symptom acknowledgement and suitability of intervention were assessed as measures for care quality and their internal consistency, respectively.

Results: PEM was addressed in 48% of the rehabilitation stays, 43% of the consultations and 65% of the hospital interventions. Failure to address PEM roughly doubled the risk of health deterioration following rehabilitation (OR=0.39, 95%CI 0.29-0.52; 40.1% vs 63.2% P= <.001) and hospital intervention (OR=0.34, 95%CI 0.13-0.89; 22.4% vs. 45.2%, P=.026).

PEM-focus during the clinical contact was associated with significantly higher scores on patients’ rated care satisfaction and benefit of both consultation and intervention. Furthermore, addressing PEM was (inter)related to positive views about healthcare providers’ level of knowledge of ME/CFS, their acknowledgment of symptoms, obtained knowledge, and the perceived suitability of intervention (Cronbach’s alpha ≥ 0.80).

Conclusion: PEM is still frequently not acknowledged in specialist healthcare practice for ME/CFS patients in Norway. Not addressing PEM substantially increased the probability of a decline in health and functioning following intervention and was strongly associated with reduced perceived care quality, satisfaction and benefit. These findings may be related to the applied explanatory models for ME/CFS and are most likely of relevance to long COVID.

Source: Marjon E. Wormgoor, Sanne C. Rodenburg. Focus on Post-Exertional Malaise when approaching ME/CFS in specialist healthcare improves satisfaction and reduces deteriorations. Frontiers in Neurology 14- 2023. https://www.frontiersin.org/articles/10.3389/fneur.2023.1247698/abstract

‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

Abstract:

Introduction: People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.

Methods: We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3-30 years), and severity.

Results: Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient’s need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.

Conclusions: Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high-quality care.

Patient or public contribution: The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

Source: Melby L, Nair RD. ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services. Health Expect. 2023 Oct 31. doi: 10.1111/hex.13900. Epub ahead of print. PMID: 37905602. https://onlinelibrary.wiley.com/doi/10.1111/hex.13900 (Full text)

Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway

Abstract:

Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients’ experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise.

We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group.

The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and “do-no-harm” should be a guiding principle in all practice.

Source: Kielland A, Liu J, Jason LA. Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway. J Health Psychol. 2023 Apr 28:13591053231169191. doi: 10.1177/13591053231169191. Epub ahead of print. PMID: 37114822. https://journals.sagepub.com/doi/10.1177/13591053231169191 (Full text)

Socioeconomic determinants of myalgic encephalomyelitis/chronic fatigue syndrome in Norway: a registry study

Abstract:

Background:

Previous research has shown that socioeconomic status (SES) is a strong predictor of chronic disease. However, to the best of our knowledge, there has been no studies of how SES affects the risk of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that has not been based upon self-reporting or retrospectively screening of symptoms. As far as we know, this is therefore the first study that isolate and describe socioeconomic determinants of ME/CFS and calculate how these factors relate to the risk of ME/CFS diagnosis by utilizing individual level registry data, which allows for objective operationalization of the ME/CFS population, and the utilization of different control groups.

Data and methods: We utilize health registry data from all adult patients diagnosed with ME/CFS from 2016-2018 in Norway, coupled with socioeconomic data from statistics Norway from 2009-2018. We operationalize SES as household income and educational attainment fixed at the beginning of the study period. We compare the effects of SES on the risk of ME/CFS diagnosis to a population of patients with hospital diagnoses that share clinical characteristics of ME/CFS and a healthy random sample of the Norwegian population. Our models are estimated by logistic regression analyses.Results: When comparing the risk of ME/CFS diagnosis with a population consisting of people with four specific chronic diseases, we find that high educational attainment is associated with a 19% increase (OR: 1.19) in the risk of ME/CFS and that high household income is associated with a 18% increase (OR:0.82) in risk of ME/CFS. In model 2, when comparing with a healthy population sample, we find that low educational attainment is associated with 69% decrease (OR:0.31) in the risk of ME/CFS and that low household income is associated with a 53% increase (OR: 1.53).

Conclusion: We find statistically significant associations between SES and the risk of ME/CFS. However, our more detailed analyses shows that our findings vary according to which population we compare the ME/CFS patients with, and that the effect of SES is larger when comparing with a healthy population sample, as opposed to controls with selected hospital diagnoses.

Source: Hilland GH, Anthun KS. Socioeconomic determinants of myalgic encephalomyelitis/chronic fatigue syndrome in Norway: a registry study. Research Square; 2023. DOI: 10.21203/rs.3.rs-2755999/v1. https://europepmc.org/article/ppr/ppr646979 (Full text available as PDF file)

Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway

Abstract:

Background: Informal caring is expanding in many countries as populations age. There is a lot of research on how to care responsibilities are experienced by next of kin, but there is little research on men, which is the focus of this study. This specific focus is Myalgic Encephalopathy (ME), which is a condition that often affects women. This means that it is men who often find themselves in a caring role.

Aim: This project aims to explore what it was like for Norwegian men to have a caring role toward a partner with ME and how it affects everyday life.

Method: A qualitative approach was used. Ten semi-structured interviews were conducted, and the participants were recruited from different places in Norway. All were between the ages of 30 to 60 years old and were caring for a partner for several years. To analyze the data, thematic analysis was used, to find different patterns in the data.

Results: A data emerged two main themes and seven under the themes “experiencing the impact of caring for a partner with ME on everyday life “and providing different kinds of support. The experience around the role of caring was influenced by several factors, such as changes in finances and family dynamics as well as accessing formal support. Overall, the mean men felt that being in a caring role meant that life was being put on hold.

Conclusion: Findings from this study help to strengthen previous research. Having a caring role for a sick partner with ME was demanding and greatly affects everyday life. Men found the role of care challenging and it could negatively affect the person psychologically. For most people in a caring role, there was potential for better support both emotionally and financially.

Source: Elise Torp. Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway. M.Sc. Thesis. https://brage.inn.no/inn-xmlui/handle/11250/3019314?locale-attribute=en

Pale rider: the Spanish flu of 1918 and how it changed the world

Book Review:

Pale rider: The Spanish Flu of 1918 and How it Changed the World by Laura Spinney, Public Affairs; 1st edition (September 12, 2017)

Formerly Professor of Psychiatry, Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India

The COVID-19 pandemic has changed life for humanity, nothing is “normal” anymore! In the last 100 years, there has not been any similar event. The common feeling among professionals, planners, press, politicians, and people is that “life will not be the same as we knew it, after the pandemic.” Understanding the likely impact of the pandemic and its consequences would be valuable to humanity in general and mental health professionals in particular. Against this current world-shaking event, it is natural to look for similar events in human history. In this, the 1918 flu is the closest event to understand a variety of aspects of the current pandemic. The book, Pale Rider: The Spanish Flu of 1918 and how it changed the world, is one of the best books in this field.[1] That many people are looking at the 1918 flu can be seen by the number of articles in the lay press that have focused on the 1918 flu.[2],[3],[4],[5],[6],[7] Even now, a new book was published as latest as July 23, 2020.[8],[9]

Nevertheless, the book, under review, has 21 chapters with attractive chapter titles such as Like a Thief in the Night; The Doctor’s Dilemma; The Wrath of God; Chalking Doors with Crosses; Good Samaritans; The Human Factor; The Green Shoots of Recovery; Alternate Histories; and Health Care for all and Melancholy Muse.

Between the first case recorded on March 4, 1918, and the last case sometime in March 1920, it killed 50–100 million people, or between 2.5% and 5% of the global population. In terms of a single event causing major loss of life, it surpassed the First World War (17 million dead) and the Second World War (60 million dead). India was specially affected and lost around 6% of its population, the greatest loss in absolute numbers of any country in the world (an estimate of 13–18 million). The book has a special focus on India,[1] presented through the lives of Mahatma Gandhi, Tagore, Munshi Premchand, and Nirala and its impact on the Independence struggle.

Mahatma Gandhi was affected by the gastric variety of flu. At Gandhi’s ashram, several prominent members of the Independence Movement were laid low with flu. Gandhi was too feverish to speak or read; he couldn’t shake a sense of doom: “All interest in living had ceased.” Interestingly, Gandhi’s reaction was: This protracted and first long illness in my life thus afforded me a unique opportunity to examine my principles and to test them. Rabindranath Tagore returned his knighthood as a reaction to the Jallianwala Bagh massacre, and observed that British were guilty of “the same kind of ignorance of the eternal laws which primitive people show when they hunt for some so-called witch to whom they ascribe the cause of their illness, while carrying the disease germs in their own blood.” Spinney observes that disease was a major preoccupation in the writing that emerged in the 1920s, where it dovetailed with ideas about the need to reform the caste system and throw off the yoke of British rule. Munshi Premchand became the self-styled “chronicler of village life” around 1918 when he was living in the United Provinces (Uttar Pradesh), where the Spanish flu claimed an estimated 2–3 million lives alone. Also living there at that time was the poet Nirala, who lost his wife and many other members of his family to the flu. He later recalled seeing the River Ganges “swollen with dead bodies.” This was the strangest time in my life. My family disappeared in the blink of an eye.

There are sections in the book describing the feelings of anxiety accompanying the acute phase of the disease, and reports of people killing themselves while delirious. Following recovery, some patients found themselves plunged into a lingering state of lassitude and despair. Norwegian epidemiologist Svenn-Erik Mamelund studied asylum records in his country from 1872 to 1929 and found that, every year, in which there was no pandemic of influenza, only a few cases were admitted of mental illness associated with flu. However, in each of the 6 years following the 1918 pandemic, the average number of such admissions was seven times higher than in those nonpandemic years (emphasis added). Mamelund speculates that the patients admitted in those 6 years were survivors of Spanish flu who were suffering from what today we would call “postviral or chronic fatigue syndrome.”

The book provides similar creative responses in a number of countries following the pandemic. The paragraph about controversies about the quarantine makes for contemporary reading: “Quarantine and other disease containment strategies place the interests of the collective over those of the individual. When the collective is very large, those strategies have to be imposed in a top-down fashion. But mandating a central authority to act in the interests of the collective potentially creates two kinds of problems. First, the collective may have competing priorities-the need to make money, or the need to raise an army-and deny or water-down the authority’s powers of enforcement. Second, the rights of individuals risk getting trampled on, especially if the authority abuses the measures placed at its disposal.”

One of the quotes from the book can portend what we can expect in the coming years in the country. Spinney notes, “The 1918 pandemic accelerated the pace of change in the first half of the twentieth century, and helped shape our modern world. It influenced the course of the First World War and arguably, contributed to the Second. It pushed India closer to Independence, South Africa closer to Apartheid, and Switzerland to the brink of Civil War. It ushered in universal healthcare and alternative medicine, our love of fresh air and our passion for sport, and it was probably responsible, at least in part, for the obsession of twentieth-century artists with all the myriad ways in which the human body can fail.”

The book made me realize that the current pandemic will bring about extensive changes. Against this expected “mental health tsunami,” there are three tasks for each one of us: firstly, to document the experiences of individuals, families, communities, and the government; secondly, to identify the social factors contributing to vulnerabilities and resilience, to guide corrective actions; and lastly, to utilize the opportunity of heightened awareness of societal-level issues, to work toward addressing the predisposing causes for higher mortality and morbidity such as inequalities, intolerances, inadequate health infrastructure, the weak welfare network to support the vulnerable, and decentralization of powers and plans to enhance community participation.

I recommend it as an essential reading during the current pandemic period.

Source: Murthy R S. Pale rider: the spanish flu of 1918 and how it changed the world. Indian J Soc Psychiatry [serial online] 2020 [cited 2022 Jul 4];36, Suppl S1:189-90. Available from: https://www.indjsp.org/text.asp?2020/36/5/189/297158

Immunogenetic studies in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) is a chronic and debilitating disease that affects about 0.1-0.2% of the general population. The core symptoms are persistent debilitating fatigue, post-exertional malaise (PEM) and cognitive dysfunction. Most symptoms of ME/CFS are not disease specific. Additionally, there is a lack of both biomarkers and diagnostic tests for the disease, which makes accurate diagnosis difficult.

More than 20 different patient classifications and diagnostic criteria have emerged over the last four decades. Due to this, the patient population can be quite heterogeneous in terms of clinical symptoms and the extent to which the disease impacts quality of life.

There are several different theories that aim to explain the disease development of ME/CFS. In this thesis, we have taken as our starting point the growing evidence for an immunological background for ME/CFS pathogenesis. Several studies have pointed to altered NK cells, autoantibodies and T cell abnormalities in ME/CFS patients.

In addition, several genetic studies reported significant associations in various immunologically relevant genes. Most of these previous studies have been suboptimal and included heterogeneous patient populations and/or few patients in total.

Therefore, we aimed to gain a better understanding of the role of immunologically relevant genes and disease development of ME/CFS.

To do this, we employed known strategies from genetic studies in autoimmune disease and applied them to ME/CFS. We used strict quality control and included, to the best of our knowledge, the largest cohort diagnosed with the Canadian consensus criteria.

In paper I, the main goal was to follow up previously performed work by our group that reported associations between ME/CFS and HLA-C: 07: 04 and HLA-DQB1: 03: 03 alleles. The HLA (human leukocyte antigen) region consists a multitude of immunologically relevant genes in addition to the HLA genes, and there is extensive and complex linkage disequilibrium (LD) in the region.

The previously observed association signals in the HLA region were fine-mapped by genotyping five additional classical HLA loci and 5,342 SNPs (single nucleotide variants) in 427 Norwegian ME/CFS patients, diagnosed according to the Canadian consensus criteria, and 480 healthy Norwegian controls. The analysis revealed two independent association signals (p ≤ 0.001) represented by the genetic variants rs4711249 in the HLA class I region and rs9275582 in the HLA class II region.

The primary association signal in the HLA class II region was located in the vicinity of the HLA-DQ genetic region, most likely due to the HLA-DQB1 gene. In particular, amino acid position 57 (aspartic acid / alanine) in the peptide binding pit of HLA-DQB1, or an SNP upstream of HLA-DQB1 seemed to explain the association signal we observed in the HLA class II region.

In the HLA class I region, the putative primary locus was not as clear and could possibly lie outside the classical HLA genes (the association signal spans several genes DDR1, GTF2H4, VARS2, SFTA2 and DPCR1) with expression levels influenced by the ME/CFS associated SNP genotypes.

Interestingly, we also observed that > 60% of the patients who responded to cyclophosphamide treatment for ME/CFS had either the rs4711249 risk allele and/or DQB1* 03:03 versus 12% of the patients who did not respond to the treatment. Our findings suggest the involvement of the HLA region, and in particular the HLA-DQB1 gene, in ME/CFS.

Although our study is the largest to date, it is still a relatively small study in the context of genetic studies. Our findings need to be replicated in much larger, statistically more representative, cohorts.

In particular, it is necessary to investigate the involvement of HLA- 12 DQB1, a gene that contains alleles that increase the risk of several established autoimmune diseases such as celiac disease.

In paper II, we aimed to investigate immunologically relevant genes using a genotyping array (iChip) targeting immunological gene regions previously associated with different autoimmune diseases.

In addition to the Norwegian cohort of 427 ME/CFS patients (the Canadian consensus criteria), we also analyzed data from two replication cohorts, a Danish one of 460 ME/CFS patients (Canadian consensus criteria) and a data set from the UK Biobank of 2105 self-reported CFS patients.

To the best of our knowledge, this is the first ME/CFS genetic association study of this magnitude and it included more than 2,900 patients in total (of whom 887 are diagnosed according to Canadian consensus criteria).

We found no ME/CFS risk variants with a genome wide significance level (p<5×10-8), but we identified six gene regions (TPPP, LINC00333, RIN3. IGFBP/IGFBP3, IZUMO1/MAMSTR and ZBTB46/STMN3) with possible association with ME/CFS which require further follow-up in future studies in order to assess whether they are real findings or not.

Interestingly, these genes are expressed in disease-relevant tissue, e.g. brain, nerve, skeletal muscle and blood, including immune cells (subgroups of T cells, B cells, NK cells and monocytes).

Furthermore, several of the ME/CFS associated SNP genotypes are associated with differential expression levels of these genes. Although we could not identify statistically convincing associations with genetic variants across the three cohorts, we believe that our data sets and analysis represent an important step in the ME/CFS research field.

Our study demonstrated that for the future understanding of the genetic architecture of ME/CFS much larger studies are required to established reliable associations.

In paper III, we wanted to investigate previous findings from a genome wide association study of 42 ME/CFS patients who reported significant association with two SNPs in the T cell receptor alpha (TRA) locus (P-value<5×10-8).

In order to replicate these previously reported findings, we used a large Norwegian ME/CFS cohort (409 cases and 810 controls) and data from the UK Biobank (2105 cases and 4786 controls). We examined a number of SNPs in the TRA locus, including the two previous ME/CFS-associated variants, rs11157573 and rs17255510. No statistically significant associations were observed in either the Norwegian cohort or UK biobank cohorts.

Nevertheless, other SNPs in the region showed weak signs of association (P-value <0.05) in the UK Biobank cohort and meta-analyzes of Norwegian and UK Biobank cohorts, but did not remain associated after applying correction for multiple testing. Thus, we could not confirm associations with genetic variants in the TRA locus in this study.

Source: Riad Hajdarevic. PhD thesis (University of Oslo) Electronic copies must be ordered. https://www.med.uio.no/klinmed/english/research/news-and-events/events/disputations/2022/hajdarevic-riad.html

Prevalence of fibromyalgia 10 years after infection with Giardia lamblia: a controlled prospective cohort study

Abstract:

Objectives: To investigate whether acute infection with Giardia lamblia is associated with fibromyalgia 10 years after infection and whether fibromyalgia is associated with irritable bowel syndrome (IBS) and chronic fatigue (CF) in this setting.

Methods: A cohort study was established after an outbreak of G. lamblia in Bergen, Norway, 2004. Laboratory-confirmed cases and a matched control group were followed for 10 years. The main outcome was fibromyalgia 10 years after giardiasis, defined by the 2016 revisions of the fibromyalgia diagnostic criteria using the Fibromyalgia Survey Questionnaire (FSQ).

Results: The prevalence of fibromyalgia was 8.6% (49/572) among Giardia exposed compared to 3.1% (21/673) in controls (p<0.001). Unadjusted odds for having fibromyalgia was higher for Giardia exposed compared to controls (odds ratio (OR): 2.91, 95% confidence interval (CI): 1.72, 4.91), but adjusted for IBS and CF it was not (OR: 1.05, 95% CI: 0.57, 1.95). Among participants without CF the odds for fibromyalgia was 6.27 times higher for participants with IBS than those without (95% CI: 3.31, 11.91) regardless of exposure. Among participants without IBS the odds for fibromyalgia was 4.80 times higher for those with CF than those without (95% CI: 2.75, 8.37).

Conclusions: We found a higher prevalence of fibromyalgia among Giardia exposed compared to controls 10 years after the acute infection. Fibromyalgia was strongly associated with IBS and CF, and the difference between the exposed and controls can be attributed to the high prevalence of IBS and CF among the Giardia exposed. Notably, this study was not designed to establish causality between Giardia exposure and the outcomes.

Source: Hunskar GS, Rortveit G, Litleskare S, Eide GE, Hanevik K, Langeland N, Wensaas KA. Prevalence of fibromyalgia 10 years after infection with Giardia lamblia: a controlled prospective cohort study. Scand J Pain. 2021 Oct 21;22(2):348-355. doi: 10.1515/sjpain-2021-0122. PMID: 34679267. https://www.degruyter.com/document/doi/10.1515/sjpain-2021-0122/html (Full text)

Health-related Quality of Life in Norwegian Adolescents Living With Chronic Fatigue Syndrome

Abstract:

Purpose: The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors before diagnosis, at time of diagnosis and after diagnosis that were associated with HRQoL.

Methods: In this cross-sectional population-based study, HRQoL was measured by Pediatric Quality of Life Inventory™ Generic Core scale version 4.0 (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimensional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from medical records and patient interviews.

Results: Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, 95% Confidence Interval (CI) for difference (- 27; – 6)). There were positive associations between overall HRQoL and support from a schoolteacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.

Conclusion: HRQoL in adolescents diagnosed with CFS/ME was low. The associations between reported HRQoL, healthcare previously provided, support from a schoolteacher, school attendance and participation in leisure activity may provide information of value when developing refined strategies for healthcare among adolescents with CFS/ME. Possible causal relationships must however be explored in future studies.

Source: Similä WA, Halsteinli V, Helland IB, Suvatne C, Elmi H, Rø TB. Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome. Health Qual Life Outcomes. 2020;18(1):170. Published 2020 Jun 5. doi:10.1186/s12955-020-01430-z https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01430-z (Full text)

HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway

Abstract:

Background: Vaccination has been suggested to be involved in the aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). HPV vaccine was introduced in the Norwegian Childhood Immunisation Programme and offered 12 year old girls from 2009. We studied the association between HPV vaccination and risk of CFS/ME and also assessed medical history in relation to both risk of CFS/ME and HPV vaccine uptake.

Methods: Individual data from national registries, including the Norwegian Population Registry, the Norwegian Patient Registry and the Norwegian Immunisation Registry were linked using the unique personal identification number. Yearly incidence rates of CFS/ME for 2009–2014 were calculated among the 824,133 boys and girls, aged 10–17 living in Norway during these 6 years. A total of 176,453 girls born 1997–2002 were eligible for HPV vaccination and included in further analyses. Hazard ratios (HRs) of CFS/ME were estimated using Cox regression. Risk differences (RDs) of vaccine uptake were estimated with binomial regression.

Results: A similar yearly increase in incidence rate of CFS/ME was observed among girls and boys, IRR = 1.15 (95% confidence interval (CI) 1.10–1.19) and 1.15 (95% CI 1.09–1.22), respectively. HPV vaccination was not associated with CFS/ME, HR = 0.86 (95% CI 0.69–1.08) for the entire follow-up period and 0.96 (95% CI 0.64–1.43) for the first two years after vaccination. The risk of CFS/ME increased with increasing number of previous hospital contacts, HR = 5.23 (95% CI 3.66–7.49) for 7 or more contacts as compared to no contacts. Girls with 7 or more hospital contacts were less likely to be vaccinated than girls with no previous hospital contacts, RD = −5.5% (95% CI −6.7% to −4.2%).

Conclusions: No indication of increased risk of CFS/ME following HPV vaccination was observed among girls in the first 6 birth cohorts offered HPV vaccine through the national immunisation programme in Norway.

Source: Berit Feiring, Ida Laake, Inger Johanne Bakken, Margrethe Greve-Isdahl, Vegard Bruun Wyller, Siri E. Haberg, Per Magnus, Lill Trogstad. HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway. Vaccine, June 23, 2017. http://www.sciencedirect.com/science/article/pii/S0264410X17308083