Saliva Fatigue Biomarker Index As a Marker for Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample

Abstract:

Objective: The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5-17. A team of physicians made a final diagnosis of ME/CFS if the participants met criteria for up to three selected case definitions following medical and psychiatric evaluations. We assessed whether a salivary biomarker of fatigue could identify youth with ME/CFS.

Study design: We examined the ratio of the concentrations of 2 peptide fragments in saliva, referred to as the Fatigue Biomarker Index (FBI), in participants from our study diagnosed with ME/CFS (n=59) and matched controls (n=39).

Results: Significant overall differences were found in the FBI between those participants with severe ME/CFS and those with ME/CFS and the controls.

Conclusions: If confirmed in other populations, the FBI could serve as an objective test to aid in the diagnosis of severe ME/CFS.

Source: Jason LA, Kalns J, Richarte A, Katz BZ, Torres C. Saliva Fatigue Biomarker Index As a Marker for Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample. Fatigue. 2021;9(4):189-195. doi: 10.1080/21641846.2021.1994222. Epub 2021 Oct 27. PMID: 35186443; PMCID: PMC8855987.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8855987/ (Full text)

Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study

Abstract:

Background: We describe post-COVID symptomatology in a non-hospitalised, national sample of adolescents aged 11-17 years with PCR-confirmed SARS-CoV-2 infection compared with matched adolescents with negative PCR status.

Methods: In this national cohort study, adolescents aged 11-17 years from the Public Health England database who tested positive for SARS-CoV-2 between January and March, 2021, were matched by month of test, age, sex, and geographical region to adolescents who tested negative. 3 months after testing, a subsample of adolescents were contacted to complete a detailed questionnaire, which collected data on demographics and their physical and mental health at the time of PCR testing (retrospectively) and at the time of completing the questionnaire (prospectively). We compared symptoms between the test-postive and test-negative groups, and used latent class analysis to assess whether and how physical symptoms at baseline and at 3 months clustered among participants. This study is registered with the ISRCTN registry (ISRCTN 34804192).

Findings: 23 048 adolescents who tested positive and 27 798 adolescents who tested negative between Jan 1, 2021, and March 31, 2021, were contacted, and 6804 adolescents (3065 who tested positive and 3739 who tested negative) completed the questionnaire (response rate 13·4%). At PCR testing, 1084 (35·4%) who tested positive and 309 (8·3%) who tested negative were symptomatic and 936 (30·5%) from the test-positive group and 231 (6·2%) from the test-negative group had three or more symptoms. 3 months after testing, 2038 (66·5%) who tested positive and 1993 (53·3%) who tested negative had any symptoms, and 928 (30·3%) from the test-positive group and 603 (16·2%) from the test-negative group had three or more symptoms. At 3 months after testing, the most common symptoms among the test-positive group were tiredness (1196 [39·0%]), headache (710 [23·2%]), and shortness of breath (717 [23·4%]), and among the test-negative group were tiredness (911 [24·4%]), headache (530 [14·2%]), and other (unspecified; 590 [15·8%]). Latent class analysis identified two classes, characterised by few or multiple symptoms. The estimated probability of being in the multiple symptom class was 29·6% (95% CI 27·4-31·7) for the test-positive group and 19·3% (17·7-21·0) for the test-negative group (risk ratio 1·53; 95% CI 1·35-1·70). The multiple symptoms class was more frequent among those with positive PCR results than negative results, in girls than boys, in adolescents aged 15-17 years than those aged 11-14 years, and in those with lower pretest physical and mental health.

Interpretation: Adolescents who tested positive for SARS-CoV-2 had similar symptoms to those who tested negative, but had a higher prevalence of single and, particularly, multiple symptoms at the time of PCR testing and 3 months later. Clinicians should consider multiple symptoms that affect functioning and recognise different clusters of symptoms. The multiple and varied symptoms show that a multicomponent intervention will be required, and that mental and physical health symptoms occur concurrently, reflecting their close relationship.

Funding: UK Department of Health and Social Care, in their capacity as the National Institute for Health Research, and UK Research and Innovation.

Source: Stephenson T, Pinto Pereira SM, Shafran R, de Stavola BL, Rojas N, McOwat K, Simmons R, Zavala M, O’Mahoney L, Chalder T, Crawley E, Ford TJ, Harnden A, Heyman I, Swann O, Whittaker E; CLoCk Consortium, Ladhani SN. Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study. Lancet Child Adolesc Health. 2022 Feb 7:S2352-4642(22)00022-0. doi: 10.1016/S2352-4642(22)00022-0. Epub ahead of print. PMID: 35143770; PMCID: PMC8820961. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8820961/  (Full text)

Long COVID symptoms in SARS-CoV-2-positive adolescents and matched controls (LongCOVIDKidsDK): a national, cross-sectional study

Abstract:

Background: Many adolescents have been affected by the COVID-19 pandemic either directly by being infected with the virus or indirectly by lockdowns and restrictions influencing normal living. We aimed to investigate health, including symptoms of long COVID, in adolescents (aged 15-18 years) who tested positive for SARS-CoV-2 compared with a control group.

Methods: LongCOVIDKidsDK was a national, cross-sectional study carried out in Denmark, which included SARS-CoV-2-positive adolescents and matched controls. All Danish adolescents aged 15-18 years with a positive SARS-CoV-2 test during the period Jan 1, 2020, to July 12, 2021, and a control group matched (1:4) by age and sex were sent a survey from July 20, 2021. Participants had until Sept 15, 2021, to respond. Symptoms associated with COVID-19, school attendance, and health-related quality of life were investigated using ancillary questions and validated questionnaires (Paediatric Quality of Life Inventory [PedsQL] and Children’s Somatic Symptoms Inventory-24 [CSSI-24]). Statistical analyses included descriptive statistics and logistic regression. This study is registered at ClinicalTrials.gov, NCT04786353.

Findings: 24 315 adolescents with a positive SARS-CoV-2 test (case group) and 97 257 matched controls were invited to participate. 3013 matched controls were excluded because of suspected SARS-CoV-2 infection. 6630 (27·3%) responded in the case group and 21 640 (22·3%) responded and were eligible to participate in the control group. Across both groups, median age was 17·6 years (IQR 16·4-18·5), 16 277 (57·6%) of 28 270 responders were female, and 11 993 (42·4%) were male. Participants in the case group had greater odds of having at least one long COVID symptom lasting at least 2 months compared with the control group (3159 [61·9%] vs 12 340 [57·0%], odds ratio 1·22 [95% CI 1·15-1·30]; p<0·0001). Participants in the case group reported significantly lower symptom scores (ie, less somatic distress) on the CSSI-24 than in the control group: mean 10·7 (SD 11·4, median 7·0 [IQR 2·0-15·0]) versus 11·9 (10·6, 9·0 [4·0-17·0]; p<0·0001). Participants in the case group had better quality of life scores on the PedsQL than in the control group: physical functioning mean score 88·7 (SD 13·9, median 93·8 [IQR 84·4-100·0]) versus 86·5 (14·3, 90·6 [81·3-96·9]; p<0·0001); emotional functioning 77·1 (20·3, 80·0 [65·0-95·0]) versus 71·7 (21·4, 75·0 [60·0-90·0]; p<0·0001); social functioning 93·1 (12·5, 100·0 [90·0-100·0]) versus 88·4 (16·2, 95·0 [80·0-100·0]; p<0·0001); and school functioning 66·9 (22·5, 65·0 [60·0-85·0]) versus 62·9 (22·1, 65·0 [50·0-80·0]; p<0·0001). More participants in the case group than in the control group reported 16 or more sick days (1205 [18·2%] vs 2518 [11·6%]; p<0·0001) and 16 or more days of school absence (695 [10·5%] vs 1777 [8·2%]; p<0·0001).

Interpretation: Participants with SARS-CoV-2-positive tests had more long-lasting symptoms and sick leave, whereas participants in the control group had more short-lasting symptoms and worse quality of life. Knowledge of long COVID in adolescents is important to guide clinical recognition and management of this condition.

Funding: AP Møller and Chastine McKinney Møller Foundation.

Source: Kikkenborg Berg S, Dam Nielsen S, Nygaard U, Bundgaard H, Palm P, Rotvig C, Vinggaard Christensen A. Long COVID symptoms in SARS-CoV-2-positive adolescents and matched controls (LongCOVIDKidsDK): a national, cross-sectional study. Lancet Child Adolesc Health. 2022 Feb 7:S2352-4642(22)00004-9. doi: 10.1016/S2352-4642(22)00004-9. Epub ahead of print. PMID: 35143771; PMCID: PMC8820960.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8820960/  (Full text)

Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

Abstract:

Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.

Objectives: To explore teachers, counselors, and school nurses’ experiences with adapting education for students with CFS/ME aged 13-19 in secondary and high schools.

Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students’ adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.

Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

Source: Similä WA, Rø TB, Nøst TH. Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study. Front Pediatr. 2021 Nov 11;9:756963. doi: 10.3389/fped.2021.756963. PMID: 34858906; PMCID: PMC8632258. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632258/ (Full text)

Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

Abstract:

Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.

Objectives: To explore teachers, counselors, and school nurses’ experiences with adapting education for students with CFS/ME aged 13-19 in secondary and high schools.

Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students’ adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.

Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

Source: Similä WA, Rø TB, Nøst TH. Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study. Front Pediatr. 2021 Nov 11;9:756963. doi: 10.3389/fped.2021.756963. PMID: 34858906; PMCID: PMC8632258.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632258/ (Full study)

Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study

Abstract:

Objectives: To explore factors perceived as positive or negative among young people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in relation to school and everyday life.

Design: A qualitative study with semistructured individual interviews performed at the local hospital or at the informants’ homes between September 2017 and January 2018, with an additional telephone interview to collect data on experiences from the COVID-19 pandemic, conducted in September 2020. Data were analysed using a grounded theory approach.

Setting: The informants were recruited from two university hospitals that offer interdisciplinary assessments of young people with CFS/ME from various parts of Norway.

Participants: Five males and 13 females aged 13-21 years with CFS/ME diagnosed 3-56 months prior to the interviews participated.

Results: The informants were concerned about a lack of educational adaptations and missed social life at school. Educational and social adaptations could improve schooling and health among young people with CFS/ME. Negative experiences were related to a lack of knowledge about CFS/ME among school personnel and young people’s difficulties to limit activities. Online teaching as experienced during the COVID-19 pandemic was described as positive both for education and social life.

Conclusions: Young people with CFS/ME can benefit from better educational adaptations and increased social interaction with peers. From the participants’ view, factors that limit learning and socialisation include a lack of knowledge about CFS/ME among teachers and school personnel, expectations from teachers of doing more than they could manage at school, feeling alone coping with the disease and not recognising their own limitations regarding what they are able to do. Suggested factors perceived to enhance learning and socialisation were a better understanding of the disease among school personnel and peers, suitable educational adaptations and being able to socialise with peers.

Source: Similä WA, Nøst TH, Helland IB, Rø TB. Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study. BMJ Open. 2021 Nov 18;11(11):e051094. doi: 10.1136/bmjopen-2021-051094. PMID: 34794992. https://pubmed.ncbi.nlm.nih.gov/34794992/

Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study

Abstract:

Background: The purpose of this study was to follow-up an Australian cohort of adolescents newly-diagnosed with ME/CFS at a tertiary paediatric ME/CFS clinic and healthy controls over a mean period of two years (range 1-5 years) from diagnosis. Objectives were to (a) examine changes over time in health and psychological wellbeing, (b) track ME/CFS symptomatology and fulfillment of paediatric ME/CFS diagnostic criteria over time, and (c) determine baseline predictors of ME/CFS criteria fulfilment at follow-up.

Methods: 34 participants aged 13-18 years (25 ME/CFS, 23 controls) completed standardised questionnaires at diagnosis (baseline) and follow-up assessing fatigue, sleep quality and hygiene, pain, anxiety, depression, and health-related quality of life. ME/CFS symptomatology and diagnostic criteria fulfilment was also recorded.

Results: ME/CFS patients showed significant improvement in most health and psychological wellbeing domains over time, compared with controls who remained relatively stable. However, fatigue, pain, and health-related quality of life remained significantly poorer amongst ME/CFS patients compared with controls at follow-up. Sixty-five percent of ME/CFS patients at baseline continued to fulfil ME/CFS diagnostic criteria at follow-up, with pain the most frequently experienced symptom. Eighty-two percent of patients at follow-up self-reported that they still had ME/CFS, with 79% of these patients fulfilling criteria. No significant baseline predictors of ME/CFS criteria fulfilment at follow-up were observed, although pain experienced at baseline was significantly associated with criteria fulfilment at follow-up (R = 0.6, p = 0.02).

Conclusions: The majority of Australian adolescents with ME/CFS continue to fulfil diagnostic criteria at follow-up, with fatigue, pain, and health-related quality of life representing domains particularly relevant to perpetuation of ME/CFS symptoms in the early years following diagnosis. This has direct clinical impact for treating clinicians in providing a more realistic prognosis and highlighting the need for intervention with young people with ME/CFS at the initial diagnosis and start of treatment.

Source: Josev EK, Cole RC, Scheinberg A, Rowe K, Lubitz L, Knight SJ. Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study. J Clin Med. 2021 Aug 16;10(16):3603. doi: 10.3390/jcm10163603. PMID: 34441898. https://pubmed.ncbi.nlm.nih.gov/34441898/

My experience of chronic fatigue syndrome

Anonymous 16-year-old:

Chronic fatigue syndrome (CFS) is exactly what it says on the tin: it is an extreme tiredness (loss of energy and motivation) which can lead to extreme difficulty or an inability to complete basic functions. Other symptoms include sleep problems, problems thinking/remembering, headaches, dizziness and heart palpitations. As you can imagine, these symptoms have a severe impact on a person’s life and often lead to a sudden or extreme change in lifestyle (eg, time outside, time in bed, time seeing friends, etc).

The severity of CFS can often fluctuate and people with CFS typically experience a ‘boom and bust’ cycle, in which they have ‘boom’, a sudden burst of energy and (as a result) activity followed by a bust, a period of worse than usual fatigue and extremely low levels of activity.

CFS isolated me to my bed where I often had no energy to move, to talk or even to think. If I ever had enough energy to leave my bed, it would only be for an hour or two and I would often spend double or triple that time resting up again before I could consider leaving my bed again. The fact that I spent basically all day in bed meant that by night-time, although I still had no energy to do anything, I was not physically worn out enough to sleep, meaning for some time I was practically nocturnal. It also meant that school was almost impossible to attend: I missed several terms and had an attendance rate of 20%. Schoolwork—which I could rarely attempt to complete—would take three times as long as usual; it was as if I were mentally trudging through treacle in subjects in which I was previously able to sprint through.

Source: My experience of chronic fatigue syndrome. BMJ Paediatr Open. 2021 Jun 25;5(1):e001165. doi: 10.1136/bmjpo-2021-001165. PMID: 34250274; PMCID: PMC8237727. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8237727/ (Full text)

Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Purpose: Few studies have examined parent-child discrepancies on self-report measures of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology and health-related quality of life (HRQOL). The aim of this study was to investigate parent-child reporting discrepancies between a pediatric sample of diagnosed patients with ME/CFS and controls to better understand the role of children and adolescent reporting.

Method: Data for this study were drawn from a community-based epidemiological study of pediatric ME/CFS in the Chicagoland area. A total of 147 parent-child dyads (75 pairs with ME/CFS and 72 control pairs) completed measures assessing HRQOL and ME/CFS symptomatology. At the individual level, agreement was assessed using intra-class correlation coefficient (ICC) scores. Agreement was measured at the group level by a comparison of means using paired-sample t-tests.

Results: Intra-class correlations revealed varied agreement in both parent-child pairs of children who met at least one case definition of ME/CFS and in parent-child pairs in the control group.

Conclusion: The current study provides support for the existence of discrepancies between parent-child reports of ME/CFS symptomatology and HRQOL measures. Limitations and future directions are discussed.

Source: Ekberg KM, Torres C, Jason LA. Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res. 2021 Jun 30. doi: 10.1007/s11136-021-02919-w. Epub ahead of print. PMID: 34191221. https://pubmed.ncbi.nlm.nih.gov/34191221/

Postdengue chronic fatigue syndrome in an adolescent boy

Abstract:

Chronic fatigue syndrome (CFS) is often preceded by a viral illness and has recurrent ‘flulike’ symptoms which include a wide spectrum of musculoskeletal and neurological clinical features. The condition is also known as myalgic encephalomyelitis and systemic exertional intolerance syndrome. CFS has been reported following dengue among adult patients. We report the case of an 11-year-old boy who developed CFS following recovery of dengue haemorrhagic fever (DHF). The reported child was initially managed as for DHF and was clinically asymptomatic on post-discharge day 3. He was re-admitted after 3 weeks with severe joint pains, myalgia and unbearable headache. As his symptoms persisted, he was investigated in-depth. All investigations were normal except mild elevation of liver functions. The diagnosis of CFS secondary to DHF was made by exclusion of differential diagnosis. At 1-year follow-up, patient continues to have symptoms after treatment with physiotherapy and nutrition counselling.

Source: Thadchanamoorthy V, Dayasiri K. Postdengue chronic fatigue syndrome in an adolescent boy. BMJ Case Rep. 2021 Jun 7;14(6):e238605. doi: 10.1136/bcr-2020-238605. PMID: 34099442. https://pubmed.ncbi.nlm.nih.gov/34099442/