Research round up

The ME Association ME/CFS (& Long Covid) Weekly Research Round-up

July 16, 2021

The weekly research round-up now includes recent publications about ME/CFS and about Long Covid. We highlight several 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 and available to anyone.

This extensive library of research is normally updated at the end of each month, but with the change in staff, it will be updated again by 01 August 2021.

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.

ME/CFS Research Published 03 – 09 July 2021 

Four new research studies on ME/CFS have been published during this period and we have also included twelve studies on Long Covid. We highlight two on ME/CFS from the selection below: 

The first study (1) will resonate with many of you as it looks at the stigma surrounding ME/CFS. It examined people with self-diagnosed ME/CFS and found that those with higher perceived stigma experienced poorer health-related and social outcomes.   

The fourth study (4) looks at the role of neuroendocrine autoimmune dysfunction in ME/CFS. Studies have previously found autoimmune diseases affect the hypothalamus (an area of the brain) as occurs in celiac disease. 

It found anti-pituitary (APA) and anti-hypothalamic (AHA) antibodies to be associated with hypothalamic/pituitary dysfunction suggesting that hypothalamic/pituitary autoimmunity may play an important role in ME/CFS, especially in its more severe forms. 

1. Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome 

Froehlich L, Hattesohl DB, Cotler J, Jason LA, Scheibenbogen C, Behrends U. J Health Psychol. 2021 Jul 9:13591053211027631. 


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available.  

People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic. In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others' causal attributions relate to lower satisfaction with social roles and activities and functional status.  

Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma. 

2. Incidence of chronic Q fever and chronic fatigue syndrome: a six year follow-up of a large Q fever outbreak 

Ankert J, Frosinski J, Weis S, Boden K, Pletz MW.  Transbound Emerg Dis. 2021 Jul 9. [Epub ahead of print.] 


Objectives: Acute Q fever is a generally self-limiting infection caused by the intracellular gram-negative bacterium Coxiella (C.) burnetii. For yet unknown reasons, a subset of patients develops chronic infection. Furthermore, a Chronic Fatigue Syndrome (CFS) as post-acute Q fever sequelae has been described. We here investigated the rates of chronic Q fever and incidences of CFS six years after one of the largest European Q fever outbreaks that occurred in Jena, Germany in 2005 with 331 reported cases, who lived in proximity of a grazing sheep herd. 

Methods: A total of 80 patients and 52 non-diseased household members from the former outbreak, were enrolled six years after the outbreak, blood samples collected and tested for a chronic Q fever were determined by seroprevalence using referenced immunofluorescence tests. Also, the presence of a CFS was assessed using the Short Form Symptom Inventory developed by the Centers (United States) for Disease Control and Prevention (SF CDC- SI). 

Results: In 80 out of 132 (60.6%) study participants, previous Q fever infection was confirmed serologically, while no previous infection was detected in the 52 household members. None of the participants fulfilled the serological criteria of chronic Q fever. The evaluation of the CDC-SI did not show any differences between the two groups. Also, there was no difference between both groups regarding fulfilment of CFS-defining criteria (n = 3 (3.8 %; sero-positive) vs. n = 2 (3.8 %; sero-negative), p = 0.655). 

Conclusion: Our six-year follow-up study of a large Q fever outbreak did not find evidence for chronic Q fever or post Q fever CFS. There was no asymptomatic sero-positivity in household members of Q fever patients. 

3. Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey 

Samantha Morehouse, Krystal Schaible, Olivia Williams, Ellen Herlache-Pretzer & Stacey Webster (2021) Fatigue: Biomedicine, Health & Behavior, 


Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. 

There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5]. 

Purpose: To examine the perceived impacts of participation in online support groups on depression, anxiety, and quality of life among people with ME/CFS. 

Results: Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships, and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies. 

Conclusion: Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience. 

4. Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome 

De Bellis A, Bellastella G, Pernice V, Cirillo P, Longo M, Maio A, Scappaticcio L, Maiorino MI, Bellastella A, Esposito K, Montoya JG. J Clin Endocrinol Metab. 2021 Jul 13:dgab429. Epub ahead of print. 


Context: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe chronic illness which reduces the quality of life. A potential role of neuroendocrine autoimmune dysfunction has been hypothesized. 

Objective: To investigate the occurrence of anti-pituitary (APA) and anti-hypothalamic (AHA) antibodies and possible related hypothalamic/pituitary dysfunctions in ME/CSF patients. 

Design, setting, patients and other participants: This is a case-control study conducted in University Hospital setting (Stanford, Naples). Thirty women with ME/CSF (Group 1) diagnosed according to Fukuda, Canadian, and IOM criteria, at Stanford University, were enrolled and compared with 25 age-matched healthy controls. 

Main outcome measures: APA and AHA were detected by immunofluorescence; moreover, we investigated hormonal secretions of anterior pituitary and respective target glands and plasma and urinary osmolality. Both APA and AHA titers were assessed and the prevalence of pituitary hormone deficiencies was also investigated. 

Results: Patients in Group 1 showed a high prevalence of AHA (33%) and APA (56%) and a significant lower levels of ACTH/cortisol, and GH peak/IGF1 vs controls (all AHA/APA negative). Patients in Group 1A (13 patients positive at high titers, ≥1:32) showed ACTH/cortisol and GH peak/ IGF1 levels significantly lower and more severe forms of ME/CFS with respect to patients in Group 1B (7 positive at middle/low titers,1:16-1:8) and 1C (10 Ab negative patients). 

Conclusions: Both AHA and/or APA at high titres associated with hypothalamic/pituitary dysfunction suggest that hypothalamic/pituitary autoimmunity may play an important role in the manifestations of ME/CFS, especially in its more severe forms. 

Long-COVID Research References  

  1. Persistent symptoms in adult patients one year after COVID-19: a prospective cohort study 
  1. Long Covid: does it exist? What is it? We can we do for sufferers? 
  1. Long COVID in Patients with Mild to Moderate Disease: Do Thyroid Function and Autoimmunity Play a Role? 
  1. Clinical predictors of long COVID-19 and phenotypes of mild COVID-19 at a tertiary care centre in India 
  1. Persistent symptoms in adult patients one year after COVID-19: a prospective cohort study 
  1. Clinical characterization of dysautonomia in long COVID-19 patients 
  1. Symptoms, complications and management of long COVID – a review. 
  1. The kids are not alright: A preliminary report of Post-COVID syndrome in university students 
  1. Central Sensitization Phenotypes in Post Acute Sequelae of SARS-CoV-2 Infection (PASC): Defining the Post COVID Syndrome 
  1. Post Viral Olfactory Dysfunction After SARS-CoV-2 Infection: Anticipated Post-pandemic Clinical Challenge 
  1. Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms 
  1. Long-term sero-positivity for IgG, sequelae of respiratory symptoms, and abundance of malformed sperms in a patient recovered from severe COVID-19 

Katrina Pears, Research Correspondent, ME Association 

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