The ME Association ME/CFS Research Round-up

November 23, 2020

Emma Northwood, Research Correspondent, ME Association

We show below brief summaries of the research studies about ME/CFS that have recently been published, followed by the abstracts from those studies.

All research relating to ME/CFS can be located in the ME Association: Index of ME/CFS Published Research.

This extensive library of research is updated at the end of each month and is correct to 02 November 2020. It is a free resource and available to anyone.

The Index provides an A-Z of published research studies and selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS).

You can use it to easily locate and read any research in a particular area that you might be interested in, e.g. epidemiology, infection, neurology, post-exertional malaise etc.

You can also find the Research Index in the Research section of the website together with a list of Research Summaries that provide lay explanations of the more important and interesting work that has been published to date.

ME/CFS Research Published 08-20 November 2020

In the past week, 6 new research studies were published:

The first piece of research listed here (1), received news coverage in Canada describing a possible way forward in diagnosing patients with ME/CFS.

Specific components of blood were measured ME/CFS – after inducing post-exertional malaise (the worsening of symptoms after exertion) ME/CFS – from ME/CFS patients and healthy controls. However, due to the small number of participants and the method of inducing post-exertional malaise being unproven, it only represents a good piece of preliminary work that needs to be evaluated further before we can use it as a diagnosis tool.

Another piece of research (2) looks at the evidence of 47 different studies, on the informal (significant others) and formal (professional) support that people experienced and preferred for CFS/ME.

The authors hoped that the results from this study, could shift clinician (and societal) attitudes towards greater understanding and receptivity towards the experiences and needs of patients with CFS/ME.

Other research includes, a way to assess the severity of ME/CFS (3), another potential way to diagnose ME/CFS using molecular biomarkers from the blood (4), the effect of COVID-19 on fibromyalgia syndrome (5) and interview results on what recovery means to ME sufferers (6).

ME/CFS Research References and Abstracts

1. Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology.
Nepotchatykh E, Elremaly W, Caraus I, Godbout C, Leveau C, Chalder L, Beaudin C, Kanamaru E, Kosovskaia R, Lauzon S, Maillet Y, Franco A, Lascau-Coman V, Bouhanik S, Gaitan YP, Li D, Moreau A.
Science Reports. 2020 Nov 12;10(1):19620.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic disease, rooted in multi-system dysfunctions characterized by unexplained debilitating fatigue.

Post-exertional malaise (PEM), defined as the exacerbation of the patient's symptoms following minimal physical or mental stress, is a hallmark of ME/CFS.

While multiple case definitions exist, there is currently no well-established biomarkers or laboratory tests to diagnose ME/CFS. Our study aimed to investigate circulating microRNA expression in severely ill ME/CFS patients before and after an innovative stress challenge that stimulates PEM.

Our findings highlight the differential expression of eleven microRNAs associated with a physiological response to PEM. The present study uncovers specific microRNA expression signatures associated with ME/CFS in response to PEM induction and reports microRNA expression patterns associated to specific symptom severities.

The identification of distinctive microRNA expression signatures for ME/CFS through a provocation challenge is essential for the elucidation of the ME/CFS pathophysiology, and lead to accurate diagnoses, prevention measures, and effective treatment options.

2. A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs
Pilkington, K. Ridge, DT. Igwesi-Chidobe, CN. Chew-Graham, CA. Little, P. Babatunde, O. Corp, N. McDermott, C. and Cheshire, A.
Social Science & Medicine 2020 Nov 265; 113369

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability.

There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME.

We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed.

Our synthesis suggested that to understand people with CFS/ ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework.

Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support.

This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward. 

3. Accurate and objective determination of myalgic encephalomyelitis/chronic fatigue syndrome disease severity with a wearable sensor
Palombo T, Campos A, Vernon SD and Roundy S.
Journal of Translational Medicine. 2020 Nov 10;18(1):423.

Background: Approximately 2.5 million people in the U.S. suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

This disease negatively impacts patients' ability to function, often resulting in difficulty maintaining employment, sustaining financial independence, engaging socially with others, and in particularly severe cases, consistently and adequately performing activities of daily living.

The focus of this research was to develop a sensor-based method to measure upright activity defined as time with feet on the floor and referred to as UpTime, as an indicator of ME/CFS disease severity.

Methods: A commercially available inertial measurement unit (IMU), the Shimmer, was selected for this research. A Kalman filter was used to convert IMU data collected by the Shimmer to angle estimates. Angle estimate accuracy was confirmed by comparison to a motion capture system.

Leg angle estimates were then converted to personalized daily UpTime scores using a critical angle of 39º from vertical to differentiate between upright (feet on the floor) and not upright.

A 6-day, case-control study with 15 subjects (five healthy controls, five moderate-level ME/CFS, and five severe-level ME/CFS) was conducted to determine the utility of UpTime for assessing disease severity.

Results: UpTime was found to be a significant measure of ME/CFS disease severity.

Severely ill ME/CFS patients spend less than 20% of each day with feet on the floor. Moderately ill ME/CFS patients spend between 20-30% of each day with feet on the floor.

Healthy controls have greater than 30% UpTime. IMU-measured UpTime was more precise than self-reported hours of upright activity which were over-estimated by patients.

Conclusions: UpTime is an accurate and objective measure of upright activity, a measure that can be used to assess disease severity in ME/CFS patients.

Due to its ability to accurately monitor upright activity, UpTime can also be used as a reliable endpoint for evaluating ME/CFS treatment efficacy.

Future studies with larger samples and extended data collection periods are required to fully confirm the use of UpTime as a measure of disease severity in ME/CFS.

With the added perspective of large-scale studies, this sensor-based platform could provide a recovery path for individuals struggling with ME/CFS.

4. Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population
Kitami T, Fukuda S, Kato T, Yamaguti K, Nakatomi Y, Yamano E, Kataoka Y, Mizuno K, Tsuboi Y, Kogo Y, Suzuki H, Itoh M, Morioka MS, Kawaji H, Koseki H, Kikuchi J, Hayashizaki Y, Ohno H, Kuratsune H, Watanabe Y.
Science Reports 2020 Nov 16;10(1):19933.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options.

To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and faecal microbiome analysis.

Here, we identified a set of 26 potential molecular markers that distinguished ME/CFS patients from healthy controls. Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers.

When we correlated these molecular changes to sleep and cognitive measurements of fatigue, we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.

Sleep, lipoprotein, and microbiome changes occur early during the course of illness suggesting that these markers can be examined in a larger cohort for potential biomarker application.

Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.

5. The effect of novel coronavirus disease-2019 (COVID-19) on fibromyalgia syndrome
Salaffi F, Giorgi V, Sirotti S, Bongiovanni S, Farah S, Bazzichi L, Marotto D, Atzeni F, Rizzi M, Batticciotto A, Lombardi G, Galli M, Sarzi-Puttini P.
Clinical and Experimental Rheumatology. 2020 Nov 16.

Objectives: Fibromyalgia syndrome (FM) is a complex disease that is mainly characterised by chronic widespread pain, fatigue and sleep disturbances and may be precipitated or worsened by many stressors. The aim of this study was to observe the behaviour of FM symptoms during the course of coronavirus disease 2019 (COVID-19).

Methods: Patients who had been diagnosed as having FM for ≥3 months were recruited between February and May 2020. The collected data were age, sex, educational level and marital status; height and weight; and the scores of the revised Fibromyalgia Impact Questionnaire (FIQR), the modified Fibromyalgia Assessment Status 2019 (FASmod), and the Polysymptomatic Distress Scale (PDS). The patients were divided into those with or without concomitant COVID-19 infection.

Results: Eight hundred and ninety-seven (93%) of the 965 patients (881 women [91.3%] and 84 men [8.7%]) were followed up on an outpatient basis because of FM and 68 (7.0%) were either followed up as out-patients or hospitalised because of COVID-19.

There was no difference in the sociodemographic data of the two groups, but there were statistically significant between-group differences in the results of the clinimetric tests.

The major differences between the score of the items (those with the greatest disease impact) were the following related symptoms: sleep quality (FIQR15), fatigue/energy (FIQR13), pain (FIQR12), stiffness (FIQR14).

Conclusions: The mean total and subdomain scores of all the tests were significantly higher in the patients with COVID-19, which suggests that global FM symptoms are more severe in patients with infection.

Further studies of the post-COVID19 patients are being carried out in order to discover whether the worsened symptomatology continues because of their hypersensitised state.

6. Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME
Cheshire A, Ridge D, Clark LV, White PD.
Qualitative Health Research. 2020 Nov 11:1049732320969395.

Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition.

To explore this issue, semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention, and analyzed via “constant comparison.”

The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences.

While some saw recovery as complete freedom from symptoms, many defined it as freedom from the “sick role,” with functionality prioritized.

Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful.

Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of “normality.”

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