MEA Research Roundup

ME/CFS Research Published 26 July – 1 August 2022 

The weekly research round-up includes recent publications about ME/CFS and Long Covid. We highlight the studies that have particularly caught our interest and follow these with the full list of publications together with their abstracts (summaries).

All research relating to ME/CFS can be located in the ME Association: Index of ME/CFS Published Research. It is a FREE resource, available to anyone, and updated at the beginning of each month.

The Index provides an A-Z of published research studies, 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 that you might be interested in regard to, 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 more detailed lay explanations of the more interesting work that has been published to date.

Audio Commentary by Dr Katrina Pears

ME/CFS Research Published 26 July – 1 August 2022 

There have been four new ME/CFS studies and fourteen studies on Long Covid.  

None of the studies particularly caught our attention again this week, it’s been another week with a lack of biological studies and a large number of review articles.  

We have briefly highlighted two of the studies below: 

Paper one (1) is on assessing sleep using the specific measurement tool, patient-reported outcome measurement information system® (PROMIS) short forms. The study particularly looked at: sleep disturbance, sleep-related impairment, pain interference, and pain behaviour. This study was very large, 602 ME/CFS patients and 338 healthy controls, and 441 ME/CFS patients completing a later follow-up.   

Unsurprisingly, ME/CFS patients received worse scores than healthy controls in the four different categories studied. It is a shame that the main purpose of this research was to evaluate the use of the PROMIS tool, as a large amount of data was collected in this study. If this was refocused this could have been used in a more useful way, for example with more comparisons to healthy controls. The main conclusion of the study was that PROMIS was a strong reliable tool than can be used to compare ME/CFS against other conditions, although it did show that longer-time periods need to be studied (i.e. two years plus). 

Paper two (2) is a review of controlled treatment trials, focussing only on cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Unfortunately, at the time of writing this roundup I did not have access to the full paper to fully evaluate its strengths and which previous published studies were included. However, the abstract suggests that the authors are in favour of these treatments, reporting 8-26% better outcomes with CBT and GET than control conditions. The abstract does highlight problems with these studies using self-reported measures but also the quality of published research with an apparent one-third of papers being deemed weak quality. It is worrying that with the changes in the NICE guidelines researchers still propose further investigation into these “treatments”.  

ME/CFS Research References and Abstracts  

1. Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms 

Yang M, Keller S, Lin JS.  

Qual Life Res. 2022 Jul 27:1–17.  

Abstract 

Purpose: To evaluate the psychometric properties of the patient-reported outcome measurement information system® (PROMIS) short forms for assessing sleep disturbance, sleep-related impairment, pain interference, and pain behavior, among adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

Methods: Data came from the Multi-Site ME/CFS study conducted between 2012 and 2020 at seven ME/CFS specialty clinics across the USA. Baseline and follow-up data from ME/CFS and healthy control (HC) groups were used to examine ceiling/floor effects, internal consistency reliability, differential item functioning (DIF), known-groups validity, and responsiveness. 

Results: A total of 945 participants completed the baseline assessment (602 ME/CFS and 338 HC) and 441 ME/CFS also completed the follow-up. The baseline mean T-scores of PROMIS sleep and pain measures ranged from 57.68 to 62.40, about one standard deviation above the national norm (T-score = 50). All four measures showed high internal consistency (ω = 0.92 to 0.97) and no substantial floor/ceiling effects. No DIF was detected by age or sex. Known-groups comparisons among ME/CFS groups with low, medium, and high functional impairment showed significant small-sized differences in scores (η2 = 0.01 to 0.05) for the two sleep measures and small-to-medium-sized differences (η2 = 0.01 to 0.15) for the two pain measures. ME/CFS participants had significantly worse scores than HC (η2 = 0.35 to 0.45) for all four measures. Given the non-interventional nature of the study, responsiveness was evaluated as sensitivity to change over time and the pain interference measure showed an acceptable sensitivity. 

Conclusion: The PROMIS sleep and pain measures demonstrated satisfactory psychometric properties supporting their use in ME/CFS research and clinical practice. 

2. A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome 

Ingman, T, Smakowski, A, Goldsmith, K & Chalder, T  

Psychological medicine

Abstract 

This systematic review investigated randomized controlled trials evaluating cognitive behavior therapy (CBT) and graded exercise therapy (GET) for adults with chronic fatigue syndrome (CFS).  

The objective was to determine prognosis following treatment. Studies were eligible if they were peer-reviewed and investigated treatment at least 12 weeks in duration. Studies were excluded if they used co-morbid diagnoses as entry criteria or if they did not measure fatigue, disability, or functioning.  

Literature published between 1988 and 2021 was searched for using MEDLINE, EMBASE, PsycINFO, and Web of Science.  

Study quality was assessed using the Effective Public Health Practice Project assessment tool.  

Outcomes were synthesized when three or more studies reported outcomes obtained from the same validated measurement tool. The review included 15 publications comprising 1,990 participants.  

Following CBT, and at short to medium-term follow-up, 44% considered themselves better and 11% considered themselves worse.  

Following GET, and at post-treatment to short-term follow-up, 43% considered themselves better and 14% considered themselves worse.  

These outcomes were 8-26% more favorable compared to control conditions.  

Two thirds of studies were of moderate quality and the remainder were of weak quality.  

Limitations of this review relate to the clinical heterogeneity of studies and that most outcomes were self-reported. Results suggest some support for the positive effects of CBT and GET at short to medium-term follow-up although this requires further investigation given the inconsistent findings of previous reviews. Findings may not be generalizable to severe CFS. 

3. Relationship of Body Image Concerns with some Gynecological Diseases and Chronic Fatigue Syndrome: A Review 

Ojha, A., & Kumar, D 

Mind and Society, 11(02), 129-137. 

Abstract 

The present paper was intended to examine the relationship among gynaecological diseases (Polycystic Ovarian Syndrome (PCOS), Endometriosis), Chronic Fatigue Syndrome, and Fibromyalgia with body dissatisfaction.  

A review of papers published between 2003 and 2021 as found by Google Scholar, PubMed, academia, and publish or perish. The review included studies conducted on women’s samples of reproductive age group at various developmental stages.  

Results indicated a relationship between body dissatisfaction and chronic fatigue syndrome.  

Women with PCOS reported greater body dissatisfaction, higher body uneasiness, and body image distress. Endometriosis is related to body image.  

Endometriosis and PCOS are also found to be related to chronic fatigue syndrome.  

Findings indicated the psychosomatic origins of these physical conditions as the source or antecedent factors for biologically vulnerable subjects and were explained in this framework. This body of knowledge will add to the area. Different psychological counsellors and therapeutic practitioners will utilise this knowledge to deal with such problems during sessions in clinical and hospital settings. 

4. Autoimmune Autonomic Dysfunction Syndromes: Potential Involvement and Pathophysiology Related to Complex Regional Pain Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Silicone Breast Implant–Related Symptoms and Post-COVID Syndrome 

Mahroum, N.; Shoenfeld, Y. 

Pathophysiology 2022, 29, 414-425. 

Abstract 

The pathophysiological mechanisms involved in chronic disorders such as complex regional pain syndrome, fibromyalgia, chronic fatigue syndrome, silicone breast implant–related symptoms, and post-COVID syndrome have not been clearly defined.  

The course of the pain in some of the syndromes, the absence of evident tissue damage, and the predominance of alterations in the autonomic nervous system are shared similarities between them.  

The production of autoantibodies following a trigger in the syndromes was previously described, for instance, trauma in complex regional pain syndrome, infectious agents in fibromyalgia, chronic fatigue syndrome, and post-COVID syndrome, and the immune stimulation by silicone in women with breast implants.  

In fact, the autoantibodies produced were shown to be directed against the autonomic nervous system receptors, leading to the amplification of the perception of pain alongside various clinical symptoms seen during the clinical course of the syndromes.  

Therefore, we viewed autoantibodies targeting the autonomic nervous system resulting in autonomic dysfunction as likely the most comprehensive explanation of the pathophysiology of the disorders mentioned.  

Based on this, we aimed to introduce a new concept uniting complex regional pain syndrome, fibromyalgia, chronic fatigue syndrome, silicone breast implant–related symptoms, and post-COVID syndrome, namely “autoimmune autonomic dysfunction syndromes”.  

Due to its etiological, pathophysiological, and clinical implications, the suggested term would be more precise in classifying the syndromes under one title. The new title would doubtlessly facilitate both laboratory and clinical studies aimed to improve diagnosis and make treatment options more directed and precise. 

Long-COVID Research References   

  1. Neurocognitive and Psychosocial Characteristics of Pediatric Patients With Post-Acute/Long-COVID: A Retrospective Clinical Case Series 
  1. Long COVID and the cardiovascular system – elucidating causes and cellular mechanisms in order to develop targeted diagnostic and therapeutic strategies. A joint Scientific Statement of the ESC Working Groups on Cellular Biology of the Heart and Myocardial & Pericardial Diseases 
  1. Recommendations for a voluntary Long COVID Registry 
  1. Effects of Rehabilitation on Long-COVID-19 Patient's Autonomy, Symptoms and Nutritional Observance 
  1. Exercise Limitation after Critical Versus Mild COVID-19 Infection: A Metabolic Perspective 
  1. Use of 1-MNA to Improve Exercise Tolerance and Fatigue in Patients after COVID-19 
  1. Illness perceptions in long-COVID: A cross-sectional analysis in adults 
  1. Impact of Pre-Existing Chronic Viral Infection and Reactivation on the Development of Long COVID 
  1. Sex-dependent characteristics of Neuro-Long-COVID: Data from a dedicated neurology ambulatory service 
  1. Neurocognitive screening in patients following SARS-CoV-2 infection: tools for triage 
  1. Opportunities to Improve Long COVID Care: Implications from Semi-structured Interviews with Black Patients 
  1. Relationship between the severity of persistent symptoms, physical fitness, and cardiopulmonary function in post-COVID-19 condition. A population-based analysis 
  1. Brain Metabolic PET Findings on the Long-Term Effects of COVID-19 
  1. Pathogenic Connections in Post-COVID Conditions: What Do We Know in the Large Unknown? A Narrative Review 

Dr Katrina Pears
Research Correspondent

Dr Katrina Pears - MEA Research Correspondent
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