Welcome to the 50th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles.

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Physical activity measures in patients with myalgic encephalomyelitis/chronic fatigue syndrome: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter

Author: Van Campen C M C, Rowe P C, Verheugt F W, Visser F C
Link: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02397-7

In most studies, researchers assess the activity intolerance of ME/CFS patients with questionnaires. This study compared subjective and objective measures of physical activity. The authors examined the correlation between the physical functioning scores (PFS) on the SF-36 questionnaire, and two objective measurements: the number of steps per day using an actometer, and %peak VO2 of a cardiopulmonary stress test.

A total of 99 female patients were included in this retrospective study, which used outpatient data from the Stichting CardioZorg clinic in the Netherlands. Patients were diagnosed according to the Fukuda criteria and the International Consensus Criteria. Patients were included in the study if their SF-36 scores, step measurements and %peak VO2 data were collected within a three-month period, in order to reduce variability. 
There were strong correlations between all three different measurements (PFS vs Steps, PFS vs %peak VO2, and Steps vs %peak VO2). However, large variations between the three measurements were observed in individual patients. 
The authors conclude that while the SF-36 is useful for distinguishing between sick and healthy participants, it is less useful for describing the degree of disability. For this reason, the researchers suggest that including objective measures along with questionnaires may give better indications of a patient’s capacity and may assist patient care.

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

Authors: Similä W A, Halsteinli V, Helland I B, Suvatne C, Elmi H, Rø T B
Link: https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01430-z

In adolescents, ME/CFS is the most common cause of long-term absence from school. The main aim of this cross-sectional study was to measure health-related quality-of-life (HRQoL) in Norwegian adolescents with ME/CFS. The secondary aim was to identify factors which were positively or negatively associated with HRQoL before, at and after diagnosis.

The sample comprised 63 adolescents with ME/CFS diagnosed according to the Jason (2006) paediatric criteria. The mean age at diagnosis was 15 years, and four out of five participants were female. Participants’ HRQoL was assessed using the Pediatric Quality of Life Inventory.

Overall, the HRQoL of the adolescent patients in the sample was low compared to that reported by healthy adolescents in other studies. Regression analysis showed positive associations between overall HRQoL and school attendance, support from a schoolteacher or participation in leisure activities. However, there were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.
Early diagnosis, mapping of symptoms severity and HRQoL, maintaining school contact and early action to prevent depressive symptoms might be important to improve HRQoL in these patients.

Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology

Authors: Estévez-López F, Mudie K, Wang-Steverding X, Bakken I J, Ivanovs A, Castro-Marrero J, Nacul L, Alegre J, Zalewski P, Słomko J, Strand E B, Pheby D, Shikova E, Lorusso L, Capelli E, Sekulic S, Scheibenbogen C, Sepúlveda N, Murovska M, Lacerda E
Link: https://www.mdpi.com/2077-0383/9/5/1557/htm 

In this literature review, researchers examined the prevalence of ME/CFS in Europe. Among other criteria for inclusion in the review, studies must have used one of the following sets of diagnostic criteria to select participants: Fukuda criteria, Canadian Consensus Criteria, London Criteria, International Consensus Criteria or Institute of Medicine criteria. Studies which included participants with CFS-like illness, or which used the Oxford criteria, were excluded from the review. 
Only two studies in adults and one study in adolescents met the criteria for inclusion in the review. Two of the studies were conducted in the UK, and one was conducted in Iceland. All three studies used the Fukuda criteria, and one study also used the Canadian Consensus Criteria. All three studies were judged to be of good quality. In these studies, the prevalence estimates of ME/CFS ranged from 0.1% to 2.2%. 
The authors suggested several potential causes for the variability in the estimates between studies. In particular, it was noted that GP diagnoses were often inaccurate, which impacts studies which rely on these. GP education to improve the accuracy of diagnosing ME/CFS was recommended. The authors also recommended that, until there is consensus over a case definition, studies should use multiple definitions to allow for better comparison between studies. They recommended that studies use the Fukuda criteria, Canadian Consensus Criteria or Institute of Medicine criteria. The authors also recommended that future epidemiological studies be conducted in community, rather than primary, settings, to minimise potential bias in samples.

The findings highlight the urgent need for well-designed and statistically powered epidemiological studies which are vital to addressing the healthcare needs of ME/CFS patients and to gauge the socio-economic impact of the illness.

UK to launch world’s largest genetic study into chronic fatigue syndrome

Author: Siddique H
Link: https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs

This week the UK government announced that it has granted £3.2m to fund the world’s largest genetic study into ME/CFS. The DecodeME study aims to collect DNA samples from 20,000 people from around the UK to look for genetic factors which may contribute to ME/CFS. 

The study is being led by a partnership of scientists and patients. Andy Devereux-Cooke, who is an ME/CFS patient and member of the project’s management committee, said: “As someone living with ME/CFS, I’m well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”

The researchers will begin recruiting in early 2021. More information is available on the project’s website: https://www.decodeme.org.uk/