ME Association regular research roundup

ME/CFS and Long Covid Research: 30 May – 05 June 2023

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).


The ME Association maintains a comprehensive index of published research on ME/CFS and Long Covid that is free to use and updated weekly.

Audio commentary by Dr Katrina Pears

It’s been an incredibly busy week for research, with a number of preprint studies as well as twelve new ME/CFS studies and twenty-one new Long Covid studies.

We have highlighted one of the ME/CFS studies in more detail below:

Paper eight (8) looks into heart rate variability (HRV) indices in Major depressive disorder (MDD) and chronic fatigue syndrome (CFS), due to the overlapping symptoms and to help differentiate between these two conditions.

The study used 49 patients with MDD, 44 with CFS and 46 health controls. Here electrocardiogram (ECG) was used to calculate the low-frequency (LF) and high-frequency (HF) output of the spectrum produced by the ECG. The ECG was recorded at three different intervals, rest, during a cognitive task and post-task. The data that was collected and analysed looked at the relationships between LF, HF, LF+HF, LF/HF, and HR (heart rate) collected from the ECG (referred to as HRV indices).

The study found that heart rate variability (HRV) indices share both a range of similar and different profiles, which can help aid diagnosis. Both conditions showed evidence of autonomic dysregulation. For example:

  • High-frequency heart rate was low at rest with both disorders compared to controls, but lower HF in MDD than CFS.
  • Low frequency heart rate and LF+HF at Rest were low only in MDD compared to CFS and controls.
  • Both conditions showed a reduced response during the task of all heart rate frequencies studies. Suggesting a difficultly shifting from rest to attention.
  • Both conditions showed an excessive increase in High-frequency heart rate following the task.
  • Results indicate that an overall HRV reduction during rest may support a diagnosis of MDD.
  • High frequency reduction was found in CFS, but with a lesser severity.
  • HRV disturbances were experienced during the task in both disorders, but results suggest a CFS diagnosis when the baseline HRV is not reduced.
  • Statistical methods using the HRV indices data allowed the two disorders to be differentiated with a 91.8% accuracy for MDD and 100% for CFS.

This is a neat small study, which allowed results to be collected in a short amount of time. It is reassuring to see a study which uses biological measures to clearly define between these two conditions. The study is hard to read in  respect of all the acronyms but it does give good descriptions of the effects of high-frequency and low-frequency, for example, high-frequency represents the control of heart beats and blood flow in response to breathing movements.

It is unfortunate however, that they used the Fukuda criteria to diagnose those with CFS, which is heavily criticised in its use especially when used in research. For example, problems with the Fukuda criteria include: post-exertional malaise (PEM) is not compulsory which leads to misdiagnosis, and it is not easy to use on a clinical level (a review on the contrasting case definitions has been written by Brown et al., 2013). Furthermore, there is no mention of ME (myalgic encephalomyelitis) and only chronic fatigue syndrome or CFS is used.

Also, it is slightly odd that all participants were noted to have no history of neurological or cardiological disorders, or any other psychiatric disorders. In ME/CFS, we know that orthostatic intolerance or postural orthostatic tachycardia syndrome (PoTS) is highly prevalent, so it is unusual that they found a sample with no cardiac conditions. Furthermore, it is also a symptom often listed in the diagnostic criteria. Therefore, it is interesting that autonomic dysfunction was not more noticeable in the findings presented.

There are a number of ways that this study could be improved on as a full medical record and clinical profile was not taken, so it would have been interesting to link symptom severity and HRV in CFS or even to illness duration.

The study clearly treats MDD and CFS as different conditions which need to be differentiated between, therefore, it is disappointing to see that the common HRV abnormalities which were observed led the authors to conclude there may be common pathophysiological backgrounds.

You may also be interested in reading this week:

  • Paper one (1) looks into the three overlapping conditions ME/CFS, Gulf War Syndrome (GWS) and Fibromyalgia finding that all three are associated with altered pathways in energy and lipid metabolism. The review highlights how metabolomics (the study of chemical reactions at a cellular level, these are large scale data heavy studies, see information here) can be used to help unravel these illnesses. This preprint paper is authored by Karl Morten, who the ME Association funds.
  • Paper two (2) is an analysis of the lived experiences of people with ME/CFS during the Covid-19 Lockdowns. The authors have provided us a shorter easy to read version of this research, which you can find at the bottom of this week’s roundup. The first author, Dr Emma Portch is happy for anyone to contact her about this piece of research (, furthermore, Dr Portch is currently recruiting for a new project examining medical stigma and use of social media in the ME/CFS community.
  • Paper nine (9) is a review of what we know about the similarities and differences of ME/CFS and Long Covid. The review compares the pathophysiology of the two conditions and details how strong the evidence is for certain abnormalities. Large amounts of information are tabulated in this review, so its easy to get a quick understanding of the research. This research is definitely worth a look at.

ME/CFS Research References and Abstracts 

1. Altered Lipid, Energy Metabolism and Oxidative Stress Are Common Features in a Range of Chronic Conditions

Leah Davis, Tiffany A Lodge, James Strong, Jose E Oltra, Pawel Zalewski, Etheresia Pretorius & Karl J Morten.

Heliyon, 5 June 2023 [Preprint]


Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Gulf War Syndrome (GWS) and Fibromyalgia are chronic illnesses that, despite their prevalence in society, are still of unknown aetiology. All three conditions present similar clinical symptoms and are difficult to diagnose due to a lack of appropriate biomarkers.

Currently, diagnosis consists of satisfying clinical criteria and eliminating other conditions, a lengthy and often costly process for patients. The discovery of biomarkers would significantly speed up patient diagnosis and allow the development of pharmacological therapies that target the underlying metabolic causes of these diseases.

Metabolomics is an emerging research area used to characterise the metabolites present within biological specimens. Developments within this field now allow the analysis of thousands of metabolites within different samples and model systems, and have the potential to aid in unravelling the metabolic phenotypes that underpin complex metabolic diseases. ME/CFS, GWS and Fibromyalgia are three conditions that could benefit from a plasma/tissue metabolomics analysis, allowing a greater understanding of their aetiology and identify common pathways.

An analysis of the literature in these conditions reveals alterations within pathways associated with energy and lipid metabolism with alterations in key metabolites associated with elevated oxidative stress. Understanding what might drive the elevated oxidative stress within all three illnesses will not only be important in future research but could also be a potential therapeutic target for antioxidant medications which could be implemented to reduce the symptom burden in these illnesses.

2. ‘Welcome to my world': a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Portch E, Moseley RL, Wignall L, Turner-Cobb JM, Taylor Z, Gondelle M.

Psychol Health. 2023 May 31:1-18. [Epub ahead of print.]


Objectives: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society.

Methods and measures: Thirty semi-structured interviews were conducted in pwME/CFS between June – July, 2020. Responses were qualitatively analysed using an experiential, thematic framework.

Results: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population's limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic.

Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample.

Conclusions: Our findings suggest that future work may fruitfully examine whether our participant's predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

3. Inflammation-induced pain and fatigue in fibromyalgia and ME/CFS and role of variant connective tissue

Eccles J, Amato M, Themelis K, Quadt L, Critchley H, Harrison N and Davies K.

Annals of the Rheumatic Diseases 2023;82:129.


Background: Fibromyalgia and ME/CFS are multifaceted conditions with overlapping symptoms(1); the pathophysiological mechanisms are under debate. It remains unclear whether dysregulated inflammation, induced either by an exogenous stimulus (eg a virus or other stressor), or autoimmunity, is of prime importance [2].

Objectives: 1. To determine in a novel human model the effects of an in vivo inflammatory challenge in the induction of pain and fatigue in fibromyalgia and ME/CFS compared to controls. 2. Explore potential mediators and moderators involved.

Methods: Data were available for 48 patients with confirmed diagnoses of Fibromyalgia and/ or ME/CFS and 22 matched controls, who had undergone a placebo controlled inflammatory challenge (typhoid vaccination) as part of ISRCTN78820481. Participants underwent full research diagnostic evaluation including a hypermobility assessment. Subjective pain and fatigue were assessed after saline injection and typhoid vaccination (VAS). Linear regression models were used to explore predictors, with adjustment for potential confounders (age/gender) and baseline levels as appropriate.

Mediation analyses (looking for mechanistic effects) were conducted according to the method of Hayes (3) and mediation considered significant if bootstrapped confidence intervals of the estimated indirect effect did not cross zero. In these mediation analyses predictor variable was group membership (patient or control), outcome variable was change in 1) pain and 2) fatigue induced by challenge and mediators/moderators included change in IL-6 induced by inflammatory challenge and hypermobility features.

Results: Being a patient rather than control significantly predicted inflammation-induced fatigue (B=14.89 (95%CI 3.29-26.50), t=2.56, p=0.013) and pain (B=12.88 (95%CI 0.65-25.10), t=2.11, p=0.039) after adjusting for levels induced by placebo.

Induced pain was independently predicted by level of IL-6 induced by inflammatory challenge (B=23.44 (95%CI 5.15-41.72),t=2.57, p=0.013) as was induced fatigue (B=10.63 (95%CI 2.84-18.41), t=2.73, p=0.008) Mediated moderation analyses suggested the link to induced pain and fatigue through induced inflammation was associated with hypermobility features (Index of mediated moderation 11.02 (95%CI 1.45-22.73) and 6.20 (95%CI 0.07-13.64) respectively))

Conclusion: To our knowledge this is the first human study to evaluate directly the effect of an exogenous inflammatory challenge (typhoid vaccination) in a combined group of Fibromyalgia and ME/CFS patients. Il-6 was shown to be a critical mediator. This work strongly supports the hypothesis that inflammation is key to the pathophysiology of ME/CFS. We are evaluating associated CNS inflammation in the model, as well as other associations, such as autonomic dysfunction and hypermobility. Further understanding the mediators involved in the condition should in future open the way to testing targeted anti-inflammatory therapy.

4. Increasing serum soluble CD40 ligand (sCD40L) may be a biomarker of ME/CFS and chronic Long COVID progression

Vijay Iyer.

Patient-Generated Hypotheses Journal | Issue 1, May 2023.


To date, no single blood lab test exists to diagnose or track ME/CFS or chronic Long COVID. Based on existing literature, this article brings together evidence that a molecule secreted by the immune system called sCD40L tends to become increasingly elevated in ME/CFS, Long COVID, and Multiple Sclerosis.

These studies, along with what’s known about the role of sCD40L in health and other diseases, suggest sCD40L may be useful to track over time in ME/CFS and Long COVID patients.

5. Could vascular damage caused by massive inflammatory events underlie a relapse/recovery phenotype of ME/CFS and Long COVID?

Jeffrey Lubell.

Patient-Generated Hypotheses Journal | Issue 1, May 2023


I hypothesize that there is a relapse/recovery type of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID in which a massive inflammatory event—like the inflammatory cascade prompted by the restoration of blood flow (reperfusion) to tissue that had been deprived of blood (ischemia) or an allergic or pseudoallergic reaction—causes substantial damage to blood vessels, launching a more severe phase of ME/CFS.

People with Ehlers-Danlos syndrome and other connective tissue disorders may be at particular risk of this phenotype due to having connective tissue (a key component of blood vessels) that is more easily and severely injured during inflammatory events and slower to heal, causing a much longer recovery.

6. Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome

Maciuch J, Jason LA. 

World J Neurol 2023; 9(3): 17-27.

Background: The literature is mixed about the occurrence of alcohol intolerance among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Surveys that asked respondents with ME/CFS whether they experienced alcohol intolerance within a recent time frame might produce inaccurate results because respondents may indicate that the symptom was not present if they avoid alcohol due to alcohol intolerance.

Aim: To overcome this methodologic problem, participants in the current study were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol.

Methods: The instrument used was a validated scale called the DePaul symptom questionnaire. Independent t-tests were performed among the alcohol intolerant or not alcohol intolerant group. The alcohol intolerant group had 208 participants, and the not alcohol intolerant group had 96 participants.

Results: Using specially designed questions to properly identify those with alcohol intolerance, those who experienced alcohol intolerance vs those who did not experience alcohol intolerance experienced more frequent/severe symptoms and domains. In addition, using a multiple regression analysis, the orthostatic intolerance symptom domain was related to alcohol intolerance.

Conclusion: The findings from the current study indicated that those with ME/CFS are more likely to experience alcohol intolerance. In addition, those with this symptom have more overall symptoms than those without alcohol intolerance.

7. Chronic Fatigue Syndrome and Multiple Sclerosis have Reduced Craniospinal Compliance and Dilated Pressurized Bridging Cortical Veins: A Hypothesis illustrated with two Case Studies

Grant A Bateman and Alexander R Bateman. 2023, 2023052264.


Chronic fatigue syndrome (CFS) and multiple sclerosis (MS) share similarities regarding their epidemiology, symptomatology and craniospinal physiology. Indeed, the cardinal feature of CFS, fatigue, is also a major factor in the symptomatology of the majority of MS patients.

Recently, we have found that there is a significant reduction in the craniospinal compliance in MS which affects both the stiffness of the walls of the spinal canal and the walls of the cerebral venous system. This change in compliance brings about an alteration in the effectiveness of the pulse wave dampening in the craniospinal system. The result is an impedance mismatch between the cortical veins and their draining sinuses, leading to dilatation of these upstream veins.

We deduce this dilatation can only be brought about by an increase in the pressure gradient between the vein lumen and the subarachnoid space (i.e. the transmural pressure gradient). We hypothesise that given the similarities between MS and CFS, a similar mechanism underlies the physiology of CFS. We present two case studies to highlight the expected findings in CFS patients if this hypothesis were proven to be correct.

8. Major Depressive Disorder and Chronic Fatigue Syndrome Show Characteristic Heart Rate Variability Profiles Reflecting Autonomic Dysregulations: Differentiation by Linear Discriminant Analysis

Shinba T, Kuratsune D, Shinba S, Shinba Y, Sun G, Matsui T, Kuratsune H.

Sensors. 2023; 23(11):5330.


Major depressive disorder (MDD) and chronic fatigue syndrome (CFS) have overlapping symptoms, and differentiation is important to administer the proper treatment.

The present study aimed to assess the usefulness of heart rate variability (HRV) indices.

Frequency-domain HRV indices, including high-frequency (HF) and low-frequency (LF) components, their sum (LF+HF), and their ratio (LF/HF), were measured in a three-behavioral-state paradigm composed of initial rest (Rest), task load (Task), and post-task rest (After) periods to examine autonomic regulation.

It was found that HF was low at Rest in both disorders, but was lower in MDD than in CFS. LF and LF+HF at Rest were low only in MDD. Attenuated responses of LF, HF, LF+HF, and LF/HF to task load and an excessive increase in HF at After were found in both disorders.

The results indicate that an overall HRV reduction at Rest may support a diagnosis of MDD. HF reduction was found in CFS, but with a lesser severity.

Response disturbances of HRV to Task were observed in both disorders, and would suggest the presence of CFS when the baseline HRV has not been reduced.

Linear discriminant analysis using HRV indices was able to differentiate MDD from CFS, with a sensitivity and specificity of 91.8% and 100%, respectively. HRV indices in MDD and CFS show both common and different profiles, and can be useful for the differential diagnosis.

9. ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature

Komaroff AL and Lipkin WI.

Front. Med. 10:1187163.


Some patients remain unwell for months after “recovering” from acute COVID19. They develop persistent fatigue, cognitive problems, headaches, disrupted sleep, myalgias and arthralgias, post-exertional malaise, orthostatic intolerance and other symptoms that greatly interfere with their ability to function and that can leave some people housebound and disabled.

The illness (Long COVID) is similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as well as to persisting illnesses that can follow a wide variety of other infectious agents and following major traumatic injury. Together, these illnesses are projected to cost the U.S. trillions of dollars.

In this review, we first compare the symptoms of ME/CFS and Long COVID, noting the considerable similarities and the few differences. We then compare in extensive detail the underlying pathophysiology of these two conditions, focusing on abnormalities of the central and autonomic nervous system, lungs, heart, vasculature, immune system, gut microbiome, energy metabolism and redox balance.

This comparison highlights how strong the evidence is for each abnormality, in each illness, and helps to set priorities for future investigation. The review provides a current road map to the extensive literature on the underlying biology of both illnesses.

10. Association of multiple sclerosis with chronic fatigue syndrome, restless leg syndrome, and various sleep disorders along with the recent updates

Prajjwal, Priyadarshi; Kalluru, Pavan Kumar Reddy; Marsool, Mohammed Dheyaa Marsool; Inban, Pugazhendi MBBS; Gadam, Srikanth; Al-ezzi, Saud Muthanna Shakir MD; Marsool, Ali Dheyaa Marsool; Al-Ibraheem, Abdullah Muataz Taha; Al-Tuaama, Abdullah Zeyad Hameed; Amir, Omniat; Arunachalam, Shivaram Poigai. 

Annals of Medicine & Surgery ():10.1097/MS9.0000000000000929, May 26, 2023.


Multiple sclerosis (MS) and Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) share the symptom of fatigue, and might even coexist together.

Specifically focusing on genetics, pathophysiology, and neuroimaging data, we discuss an overview of the parallels, correlation, and differences in fatigue between MS and ME/CFS along with ME/CFS presence in MS.

Studies have revealed that the prefrontal cortex and basal ganglia regions, which are involved in fatigue regulation, have similar neuroimaging findings in the brains of people with both MS and ME/CFS. Additionally, in both conditions, genetic factors have been implicated, with particular genes known to enhance susceptibility to MS and CFS.

Management approaches for fatigue in MS and ME/CFS differ based on the underlying factors contributing to fatigue. We also focus on the recent updates and the relationship between MS and sleep disorders, restless leg syndrome, focusing on pathophysiology and therapeutic approaches. Latest therapeutic approaches like supervised physical activity and moderate-intensity exercises have shown better outcomes.

11. Psychiatric disorders comorbid with general medical illnesses and functional somatic disorders: The Lifelines cohort study

Creed F.

PLOS ONE. May 30, 2023


Objective: It is not clear why psychiatric disorders are more prevalent in the functional somatic syndromes than other general medical illnesses. This study assessed the correlates of psychiatric disorders in 3 functional syndromes and 3 general medical illnesses in a population based sample.

Methods: The Lifelines cohort study included 122,366 adults with relevant data for 6 self-reported conditions: irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome (CFS), inflammatory bowel disease (IBD), rheumatoid arthritis (RA), and diabetes. For each condition the proportion with a DSM-IV psychiatric disorder was assessed.

In a cross-sectional design, logistic regression identified at baseline the variables most closely associated with current psychiatric disorder in participants with a pre-existing medical or functional condition. In a separate analysis the prevalence of psychiatric disorder prior to onset of these conditions was assessed. This was a longitudinal study with psychiatric disorder assessed at baseline in participants who subsequently developed a general medical or functional condition between baseline and follow-up.

Results: The prevalence of psychiatric disorder was higher (17–27%) in the functional somatic syndromes than the general medical illnesses (10.4–11.7%). The variables closely associated with psychiatric disorder were similar in the functional syndromes and general medical illnesses: stressful life events, chronic personal health difficulties, neuroticism, poor perception of general health, impairment of function due to physical illness and reported previous (lifetime) psychiatric disorder. The prevalence of psychiatric disorder prior to development of these disorder was similar to that of established disorders.

Conclusion: Despite the difference in prevalence, the correlates of psychiatric disorders were similar in functional and general medical disorders and included predisposing and environmental factors. The increased rate of psychiatric disorder in functional somatic syndromes appears to be evident before onset of the syndrome.

12. Chronic fatigue: What investigations? And what for?

Gramont B, Goutte J, Féasson L, Millet G, Hupin D, Cathébras P.

La Revue de Medecine Interne. 2023 May:S0248-8663(23)00593-3. [Article in French]

Chronic fatigue is a frequent complaint, expressed at all levels of the healthcare system. It is perceived as disabling in a high proportion of cases, and internists are frequently called upon to find “the” cause. The etiological diagnostic approach of an unexplained state of fatigue relies on the careful search for more specific clues by questioning and clinical examination.

It is necessary to recognize the limited place of complementary examinations apart from the basic biological parameters. Simple rating scales can be useful in the etiological and differential diagnosis of fatigue.

Chronic fatigue syndrome (CFS), in the current state of knowledge, cannot be considered as a specific pathological entity distinct from idiopathic chronic fatigue states, and does not have validated biomarkers.

It is important to know that a state of chronic asthenia often results from several intricated etiological factors (biological, psychological and social), to be classified as predisposing, precipitating and perpetuating.

The metabolic and cardiorespiratory exercise test has a major place in the assessment and management of fatigue, as a prerequisite for personalized retraining or adapted physical activity (APA), which are the treatments of choice for chronic fatigue.

Long-COVID Research References

  1. Multidimensional Sleep Health Prior to SARS-CoV-2 Infection and Risk of Post–COVID-19 Condition
  2. The impact of long Covid on people’s capacity to work
  3. Neuroinflammation After COVID-19 With Persistent Depressive and Cognitive Symptoms
  4. An Analysis of Self-reported Long COVID-19 Symptoms on Twitter
  5. Data sharing: A Long COVID perspective: challenges, and road map for the future
  6. Long COVID Clinical Phenotypes Up to Six Months After Infection Identified by Latent Class Analysis of Self-Reported Symptoms
  7. Clinical and Socio-Demographic Variables Associated With Long COVID-19: A Cross-Sectional Study
  8. New-onset type 1 diabetes in children and adolescents as postacute sequelae of SARS-CoV-2 infection: A systematic review and meta-analysis of cohort studies
  9. Compounding for the Treatment of COVID-19 and Long COVID, Part 3: The Role of Toll-like Receptors in SARS-CoV-2 Infection and COVID Development
  10. ABO blood group as a determinant of COVID-19 and Long COVID: An observational, longitudinal, large study
  11. Use of latent class analysis and patient reported outcome measures to identify distinct long COVID phenotypes: A longitudinal cohort study
  12. Case Report of Improvement in Long-COVID Symptoms in an Air Force Medic Treated With Transcranial Magnetic Stimulation Using Electro-Magnetic Brain Pulse Technique
  13. Long COVID syndrome after SARS-CoV-2 survival in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension
  14. Randomised, controlled, open-label pragmatic trial evaluating changes in functional exercise capacity after primary care PU lmonary RE habilitation in patients with long COVID: protocol of the PuRe-COVID trial in Belgium
  15. Effectiveness of exercise training on the dyspnoea of individuals with long COVID: A randomised controlled multicentre trial
  16. Long COVID: Complications, Underlying Mechanisms, and Treatment Strategies
  17. Scientific Rationale for the Treatment of Cognitive Deficits from Long COVID
  18. Pre-assessment and management of long COVID patients requiring elective surgery: challenges and guidance
  19. Scientific Rationale for the Treatment of Cognitive Deficits from Long COVID
  20. Clinical and Socio-Demographic Variables Associated With Long COVID-19: A Cross-Sectional Study
  21. Use of latent class analysis and patient reported outcome measures to identify distinct long COVID phenotypes: A longitudinal cohort study

Lay Summary: Paper reference two (2)

“Welcome to My World”: A thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown (Published in Psychology & Health)

Rationale and Research Questions: Inspired by community blogs published in 2020, we sought to understand how the first UK government-imposed lockdown period was experienced by people with ME/CFS (pwME/CFS). Drawing on Whittingham’s (2020) enquiry ( , we specifically probed whether the ‘lockdown was easier or harder to bear for those who might have lost their freedom a long time ago?’ We further developed our interview schedule to explore (a) the potential parallels between experiences of previous health-imposed, and current government-imposed lockdowns, (b) commonalities and departures in how the ME/CFS community and general population might experience lockdown, (c) the types of coping strategies that pwME/CFS had at their disposal for handling this new form of restriction, and (d) whether or not pwME/CFS thought collective experience of restriction might engender greater public empathy and understanding for those who would continue to live a restricted existence when lockdown ended.

Method and Analysis: Between June – July 2020 we conducted audio-recorded, semi-structured interviews with 30 pwME/CFS (27 female; 1 male; 1 non-binary; 1 undisclosed; average age = 38; age range: 18 – 65). Most participants self-reported their current illness severity level (Mild = 2; Mild-to-Moderate = 2; Moderate = 3; Moderate-to-Severe = 8; Severe = 6; Very Severe = 2). While participants did not use a recognised classification system to provide this report, their answers suggest that our findings are broadly representative of a wide distribution of pwME/CFS. Illness duration in the sample ranged from 2 – 32 years, with an average of 9 years.

One interviewer was a pwME/CFS and the other had a close relationship with several pwME/CFS. Interview sessions were flexibly scheduled to reduce potential for PEM/PENE/PESE. Interview responses were analysed using an experiential form of thematic analysis to derive themes and sub-themes.

Results, Discussion of findings and Implications

Theme 1: Lockdown as a collective experience? Many participants commented that enhanced digital accessibility during lockdown allowed them to easily retain relationships with those in the chronic illness community, reconnect with friends and family members, and engage in activities and communities that they had previously struggled to join in person. The latter also meant they could forgo the stress, symptom-exacerbation, guilt, and worry associated with either attending or having to cancel in-person attendance at events. This enhanced societal involvement was also mentioned in reports of others with energy-limiting chronic illnesses during lockdown, however, departed from accounts of other disabled populations which instead highlighted the negative impact of being unable to engage in face-to-face activities or adapt to online forms of social interaction.

Elements of lockdown thus suited some pwME/CFS, however, many of our participants highlighted that they had simply been unintended beneficiaries of accessibility changes designed to cater universally.

Theme 2: Distinctive experiences of lockdown: Many participants noted that the general population’s experience of government-imposed lockdown was incomparable to the health-imposed lockdowns that they had previously endured. In particular, that health-imposed lockdowns were long-lasting with no certain end date, and that the general public, despite being confined to their homes, could still engage in a range of different activities which would be impossible to perform for those experiencing ME/CFS symptoms. As such, our participants perceived that some members of the general public might view lockdown as a novelty, a chance for self-improvement and an opportunity to identify and engage with new hobbies, where in many respects it was ‘business as usual’ for pwME/CFS.

Participants also noted that the degree of adaptation required to live within the restrictions of a government-imposed lockdown were much less extreme than those required to survive with a chronic illness. As such they felt frustrated and unseen when they encountered complaints, made by members of the general public, about having to wear masks / being unable to go out whenever they pleased / having to temporarily forego leisure activities.

Theme 3: Coping Strategies during lockdown: Participants felt able to apply many of the coping strategies they had developed during previous health-imposed lockdowns to this new source of restriction. In particular, participants highlighted the benefits of maintaining a flexible routine within the bounds of restriction, seeking and maintaining social support, and integrating small daily pleasures. These features suggest the presence of Psychological Flexibility in our sample; a hallmark of adaptability and resilience that was also linked to more positive mental and physical health outcomes in global samples of the general public during the pandemic.

They are also congruent with the synergistic elements of Acceptance and Commitment Therapy (ACT). Unlike (historically maladaptive) applications of Cognitive Behavioural Therapy, which require the pwME/CFS to question their energy-limitations and push beyond their boundaries, ACT accommodates activity pacing, asking the pwME/CFS to objectively monitor and ‘accept’ their energy envelope and ensure that identity-maintaining and value-driven activities are included within their limited schedule. Acceptance and benefit-finding have been inconsistently found in research conducted within ME/CFS populations (and other illnesses with a fluctuating course and poor prognosis), thus our findings suggest that future research could fruitfully explore how these aspects are built and maintained through personal adversity.

In addition, participants felt that there had been few opportunities to share their expert coping strategies on platforms that would reach members of the general public, who might benefit from their advice. Where participants had shared their tips (usually via their own social media platforms) they felt that the general public might not appreciate that this knowledge stemmed from their experience of similar, prior health-imposed lockdowns, nor would they recognise that sharers of this information would return to such circumstances when lockdown ended.

Theme 4: Predictions regarding a post-pandemic future: Consistent with elements contained in the themes above, participants were generally pessimistic about the potential for the shared circumstances of the government-imposed lockdown to change public perception, understanding and empathy for those continuing to endure future health-imposed lockdowns. Indeed, as our interviews were conducted at a time when restrictions were beginning to lift, participants noted that many of the more accessible features that had characterised lockdown were disappearing quickly (e.g., neighbourhood support, food and medication deliveries, live-streamed events, free platforms for digital interaction).

Overall, participants perceived that the general public would attempt to return to their version of normality as quickly as possible, with little regard for those left behind, who now faced reinstated societal alienation and isolation, both as a consequence of their symptom load and their need to protect themselves from viral transmission.

Newspaper reports and community blogs, published on the journey out of lockdown, appear to suggest that these expectations were met, particularly in employment settings; circumstances that pose difficulties both for existing members of the post-viral community, as well as those newly joining as a direct consequence of COVID-19 infection.  

Acknowledgments: We extend sincere thanks to all of our participants, who sacrificed their extremely limited energy to provide their valuable insights. We also thank the bloggers and advocates within the ME/CFS community whose work helped to catalyse the project, inform our interview schedule, and contextualise our findings.

Dr Katrina Pears,
Research Correspondent.
The ME Association.

Dr Katrina Pears - MEA Research Correspondent
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