The ME Association Research Round-up

September 25, 2020

Charlotte Stephens, Research Correspondent, ME Association

We show below brief summaries of the research studies about ME/CFS that have been published in the last week, 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 every month, and is correct to the end of August 2020. It is a free resource 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 18 – 24 September 2020

This week, 4 new research studies have been published:

  1. Researchers from London reviewed self-report data from 995 patients from a specialist outpatient clinic who received cognitive behavioural therapy (CBT) for CFS. They concluded that patients’ fatigue, physical functioning and social adjustment all significantly improved following cognitive behavioural therapy.
  2. Researchers from the Netherlands looked at the effects of orthostatic stress testing (head up tilt test) on pain thresholds in people with ME/CFS. They concluded that orthostatic stress (sitting or standing upright) can negatively influence pain perception in ME/CFS.
  3. A study carried out by the Universities’ of Bath and Bristol on 164 12-18-year olds with ME/CFS found that mental health problems are particularly common amongst adolescents with ME/CFS. 20% had major depressive disorder and 27% an anxiety disorder.
  4. The National Institutes of Health (NIH), USA, led 9 focus groups with ME/CFS patients in order to characterize post-exertional malaise (PEM).  

ME/CFS Research References and Abstracts

1. Adamson J et al. (2020)
Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: outcomes from a specialist clinic in the UK.
Journal of The Royal Society of Medicine [Epub ahead of print].

Objectives: Cognitive behavioural therapy is commonly used to treat chronic fatigue syndrome and has been shown to be effective for reducing fatigue and improving physical functioning.

Most of the evidence on the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome is from randomised control trials, but there are only a few studies in naturalistic treatment settings. Our aim was to examine the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome in a naturalistic setting and examine what factors, if any, predicted outcome.

Design: Using linear mixed effects analysis, we analysed patients' self-reported symptomology over the course of treatment and at three-month follow-up. Furthermore, we explored what baseline factors were associated with improvement at follow-up.

Setting: Data were available for 995 patients receiving cognitive behavioural therapy for chronic fatigue syndrome at an outpatient clinic in the UK.

Main outcome measures: Patients were assessed throughout their treatment using self-report measures including the Chalder Fatigue Scale, 36-item Short Form Health Survey, Hospital Anxiety and Depression Scale and Global Improvement and Satisfaction.

Results: Patients’ fatigue, physical functioning and social adjustment scores significantly improved over the duration of treatment with medium to large effect sizes (|d| = 0.45–0.91). Furthermore, 85% of patients self-reported that they felt an improvement in their fatigue at follow-up and 90% were satisfied with their treatment. None of the regression models convincingly predicted improvement in outcomes with the best model being (R2 = 0.137).

Conclusions: Patients’ fatigue, physical functioning and social adjustment all significantly improved following cognitive behavioural therapy for chronic fatigue syndrome in a naturalistic outpatient setting. These findings support the growing evidence from previous randomised control trials and suggest that cognitive behavioural therapy could be an effective treatment in routine treatment settings.

2. Campen C et al. (2020)
Orthostatic stress testing in myalgic encephalomyelitis/chronic fatigue syndrome patients with or without concomitant fibromyalgia: effects on pressure pain thresholds and temporal summation.
Clinical and Experimental Rheumatology [Epub ahead of print].

Objectives: Muscle pain and fibromyalgia (FM) are common among individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

We recently demonstrated that during orthostatic stress testing, adults with ME/CFS reported increased pain. In the current study, we hypothesised that pain pressure thresholds (PPT) would decrease and temporal summation (windup) would increase after head-up tilt testing (HUT), and that the presence of co-morbid FM would be associated with greater change in both measures.

Methods: We studied adult ME/CFS patients undergoing HUT. PPT and temporal summation (or windup) measurements were obtained pre- and post-HUT at the finger and shoulder.

Results: 248 ME/CFS patients (164 with FM and 84 without FM), and 22 healthy controls (HC) were analysed. In HC there were no significant differences in PPT between pre- and post- HUT (finger: from 4.7(1.6) to 4.4(1.5); shoulder: from 2.8(1.0) to 2.9(1.0)).

In ME/CFS patients with and without FM, a significant decrease in PPT post-HUT was found compared to HC (both p<0.0001). Patients with FM had a lower PPT pre- and post-HUT (finger: from 2.0(0.9) to 1.5(0.8); shoulder: from 1.2(0.5) to 1.0(0.5) compared to patients without FM (finger: from 5.0(1.6) to 3.3(1.5); shoulder: from 2.2(0.9) to1.9(1.0) (p ranging from 0.001 to <0.0001).

Windup in HC did not significantly change from pre- to post-HUT. In ME/CFS patients with and without FM windup was increased compared to HC pre-HUT (both p<0.0001), but did not significantly change post-HUT.

Conclusions: Pressure pain threshold decreased in ME/CFS patients with or without fibromyalgia after head-up tilt test (HUT), but did not change post-HUT in healthy controls.

Windup pre- and post-HUT was significantly higher compared to healthy controls, but did not change from pre- to post-HUT.

These results demonstrate that, like exercise, orthostatic stress can negatively influence the physiology of pain perception in ME/CFS.

Furthermore, the physiology of pain perception is even more negatively influenced by concomitant fibromyalgia.

3. Loades M et al. (2020)
How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study.
European Child and Adolescent Psychiatry [Epub ahead of print].

Adolescents with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) appear to be more likely to experience anxiety and/or depression using Patient Reported Outcome Measures (PROMs).

However, we do not know how accurate these are at detecting problems in this patient group given the primary symptom of fatigue. We aimed to accurately determine the prevalence of anxiety/depression using gold-standard diagnostic interviews and evaluate the accuracy of PROMs measuring mood disorders in this patient group.

We conducted a cross-sectional epidemiological study in a specialist tertiary paediatric CFS/ME service, England. The participants were 164 12-18-year olds with clinician confirmed CFS/ME and their parents.

The measures were a semi-structured diagnostic interview, the Kiddie Schedule for Affective Disorders and Schizophrenia, K-SADS, and questionnaires (Revised Children's Anxiety and Depression Scale, RCADS; Spence Children's Anxiety Scale, SCAS; Hospital Anxiety and Depression Scale, HADS). Parents completed the RCADS-P.

35% met the criteria for at least one common mental health problem. 20% had major depressive disorder, and 27% an anxiety disorder, with social anxiety and generalised anxiety being the most common.

There was high co-morbidity, with 61% of those who were depressed also having at least one anxiety disorder. The questionnaires were moderately accurate (AUC > 0.7) at detecting clinically significant anxiety/depression, although only the RCADS-anxiety reached the predefined 0.8 sensitivity, 0.7 specificity target.

Mental health problems are particularly common amongst adolescents with CFS/ME. Most screening tools were not sufficiently accurate in detecting clinically significant anxiety and depression, so these should be used with care in combination with thorough psychological/psychiatric assessment.

4. Stussman B et al. (2020)
Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Frontiers in Neurology 11: 1025.

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain.

Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness.

Scant observations in the available literature provide qualitative assessments of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened.

Methods: Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post–exertional malaise in daily life and participants' retrospective memory of post–exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding.

Results: A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations.

Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test.

Patients described post–exertional malaise as interfering with their ability to lead a “normal” life.

Conclusion: The experience of post–exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life.

Myalgic encephalomyelitis/chronic fatigue syndrome patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover.

Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options.

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