Research round up

ME/CFS Research Published 28 August – 3 September 2021

September 10, 2021

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.

It’s been another quiet week for ME/CFS research, with three new research studies on ME/CFS but twelve studies on Long Covid. None of the studies really caught our eyes this week, therefore, we have briefly covered each one below:

Many of you will also be interested in reading the first paper (1) which is timely with the recent news regarding the NICE Guidelines. This paper is a small study (only 13 participates) and is conducted through interviews.

The second study (2) included does not directly study ME/CFS but we have included it as it talks about debilitating symptoms and medically unexplained symptoms which can be attributed to ticks (infection can cause Lyme Disease). The study was conducted in Australia and includes patients referred to a clinic. Chronic Lyme disease is currently a controversial topic with symptoms similar to ME/CFS. There is a leaflet about Lyme Disease on our website shop.

The third study (3) is a review of CFS/ME and cardiovascular disease. Commonly patients are often diagnosed with orthostatic intolerance (the development of symptoms that come on when standing up from a reclining position) in the form of either orthostatic tachycardia (normal increase in heart rate that occurs after sitting up or standing, known as POTS) and/or hypocapnia (decrease in alveolar and blood carbon dioxide levels below the normal reference range). Below are the key findings highlighted by the paper:

  • ME/CFS, a clinical entity of unknown etiology characterized by PEM, is easily diagnosed when following available guidelines.
  • Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.
  • More studies are needed to understand the role of deconditioning in producing some of the characteristics of ME/CFS.

ME/CFS Research References and Abstracts 

1. ‘A life I can cope with'. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME 

Clark C, Holttum S.

Health Expect. 2021 Sep 2. [Epub ahead of print.] 


Objectives: This study aimed to explore the experience of cognitive behavioural therapy (CBT) aimed at better management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), rather than increasing activity.

Design: This was a qualitative study using grounded theory analysis.

Methods: Semi-structured interviews were conducted with 13 adults who had engaged in CBT at a specialist CFS/ME service in which CBT is aimed at improved management of the condition.

Results: A model was produced in which participants felt more able to cope with CFS/ME. Reduced fatigue did not seem to be a necessary precondition to managing. This has implications for CBT for CFS/ME.

Conclusions: Specialist CBT for CFS/ME may result in improved coping and reduced distress, independently of changes in fatigue.

Patient or public contribution: The researcher met with a representative from the university's service user advisory group (SAGE), who had lived experience of CFS/ME. They commented on possible questions for the interview topic guide and provided advice on ways in which ethical issues specific to CFS/ME could be considered, for example, prevention of harm during interviews. Second, for quality assurance as part of respondent validation, a proposed draft of the grounded theory was discussed with participants.

The etiology of myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is unknown, but involvement of the immune system is one of the proposed underlying mechanisms.

2. Characterising DSCATT: A case series of Australian patients with debilitating symptom complexes attributed to ticks 

Schnall J, Oliver G, Braat S, Macdonell R, Gibney KB, Kanaan RA.

Aust N Z J Psychiatry. 2021 Sep 1:48674211043788. [Epub ahead of print.]


Objectives(s): To characterise the clinical profile, aetiology and treatment responsiveness of ‘Australian Lyme', or Debilitating Symptom Complexes Attributed to Ticks.

Methods: Single-centre retrospective case analysis of patients referred to the Infectious Diseases Unit at Austin Health – a tertiary health service in Heidelberg, Australia – between 2014 and 2020 for investigation and treatment of suspected Debilitating Symptom Complexes Attributed to Ticks. Patients were included if they had debilitating symptoms suggested by either themselves or the referring clinician as being attributed to ticks.

Results: Twenty-nine Debilitating Symptom Complexes Attributed to Ticks cases were included in the analysis. Other than Lyme disease (83%), the most common prior medical diagnoses were Epstein-Barr virus (38%), chronic fatigue syndrome (28%) and fibromyalgia (24%). Prior histories of anxiety (48%) and depression (41%) were common. The most frequently reported symptoms included fatigue (83%), headache (72%) and arthralgia (69%). National Association of Testing Authorities/Royal College of Pathologists of Australasia-accredited serology was not diagnostic of acute infective causes, including Lyme disease, in any patient. Of 25 cases with available data, 23 (92%) had previously been prescribed antimicrobials, with 53% reporting benefit from them. The most common diagnoses made by our hospital were chronic fatigue syndrome (31%), migraines (28%) and fibromyalgia (21%). Only one patient's symptoms were not accounted for by other diagnoses.

Conclusion: This is the first case series of patients with Debilitating Symptom Complexes Attributed to Ticks. They had high rates of other medically unexplained syndromes, and no evidence of acute Lyme disease, or any common organic disease process. Debilitating Symptom Complexes Attributed to Ticks remains medically unexplained, and may therefore be due to an as yet unidentified cause, or may be considered a medically unexplained syndrome similar to conditions such as chronic fatigue syndrome.

3. Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review

Natelson BH, Brunjes DL, Mancini D

J Am Coll Cardiol. 2021 Sep, 78 (10) 1056–1067


Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medically unexplained illness characterized by severe fatigue limiting normal daily activities for at least 6 months accompanied by problems with unrefreshing sleep, exacerbation of symptoms following physical or mental efforts (postexertional malaise [PEM]), and either cognitive reports or physiological evidence of orthostatic intolerance in the form of either orthostatic tachycardia and/or hypocapnia.

Although rarely considered to have cardiac dysfunction, ME/CFS patients frequently have reduced stroke volume with a significant inverse relation between cardiac output and PEM severity.

Magnetic resonance imaging of ME/CFS patients compared with normal control subjects found significantly reduced stroke, end-systolic, and end-diastolic volumes together with reduced end-diastolic wall mass.

Another cardiovascular abnormality is reduced nocturnal blood pressure assessed by 24-hour monitoring. Autonomic dysfunction is also frequently observed with postural orthostatic tachycardia and/or hypocapnia. Two consecutive cardiopulmonary stress tests may provide metabolic data substantiating PEM.


  • ME/CFS, a clinical entity of unknown etiology characterized by PEM, is easily diagnosed when following available guidelines.
  • Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.
  • More studies are needed to understand the role of deconditioning in producing some of the characteristics of ME/CFS.

Long-COVID Research References  

  1. Incidence and risk factors for persistent symptoms in adults previously hospitalized for COVID-19
  2. Long COVID hallmarks on [18F]FDG-PET/CT: a case-control study
  3. A Randomized Controlled Trial of the Efficacy of Systemic Enzymes and Probiotics in the Resolution of Post-COVID Fatigue
  4. Neurological and psychiatric effects of COVID-19 and Long Covid
  5. Long covid: One in seven children may still have symptoms 15 weeks after infection, data show
  6. Long COVID in children and adolescents
  7. Treatment of a COVID-19 long hauler with an amniotic fluid-derived extracellular vesicle biologic
  8. Hypertension as a manifestation of COVID-19 pneumonia
  9. Neuropsychological rehabilitation program for patients with post-COVID-19 syndrome: A clinical experience
  10. Long Covid/Post Covid – Epidemiology, Possible Causes and Need for Rehabilitation for People with Mental Health Problems
  11. ‘Long COVID': Making The Invisible Visible
  12. Severe fatigue in long COVID: follow-up study in members of online long COVID support groups

 Katrina Pears, Research Correspondent, ME Association 

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