Welcome to the 90th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles.

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Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Authors: Gaglio CL, Islam MF, Cotler J and Jason LA (DePaul University, USA)
Publication: Epidemiologic Methods
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9550273/pdf/em-11-1-em-2021-0033.pdf
 
This study looked at the orthostatic intolerance (OI) and the neurocognitive aspects of the Institute of Medicine (IOM) 2015 ME/CFS diagnostic criteria. The IOM criteria includes OI and neurocognitive symptoms as interchangeable; patients can have one or the other to meet the diagnostic criteria. The aim of this research was to assess methods of operationalising OI, and to explore the interchangeable criteria for OI and cognitive impairment as part of the IOM.
Researchers recruited 242 adult participants from various online chronic illness groups and forums. Participants were screened using the Fukuda criteria and were required to self-report diagnosis and complete the DePaul Symptom Questionnaire (DSQ-1 and -2). Researchers compared IO items on the DSQ-2 and DSQ-1 to operationalise OI.  
Nearly all participants reported mild OI symptoms (98.3 %). There was only a small number of participants who reported OI without cognitive impairment (1.7 - 4.5%).
 
The authors conclude that there was a considerable overlap between cognitive impairment and OI that did not support these symptoms being interchangeable. Using well-defined surveys in a uniform way to self-report OI may improve the criteria and could also help identify mild cases of OI.

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Outcomes among confirmed cases and a matched comparison group in the Long-COVID in Scotland study

Authors: Hastie CE, Lowe DJ, McAuley A, Winter AJ, Mills NL, Black C, … Pell JP (University of Glasgow, Scotland).
Publication: Nature Communications
Link: https://www.nature.com/articles/s41467-022-33415-5#citeas
 
With ever-increasing numbers of COVID-19 infections, the number of people experiencing ongoing symptoms (Long COVID) is also increasing. A deeper understanding of Long COVID is important to better inform appropriate social and health supports. This study aimed to determine the frequency, nature, determinants, and impact of long-COVID on the general population in Scotland.
 
All Scottish individuals aged over 16 years recording a positive PCR test were invited to participate in this study. In total, participants included 33,281 people with a laboratory-confirmed COVID-19 infection (including 1,795 asymptomatic infections) and 62,957 individuals who had never been infected. All participants completed questionnaires at 6, 12 and 18 months. Questionnaires assessed pre-existing health conditions, current symptoms, quality of life, and limitations in daily activities. Questionnaire data was also linked to hospitalisation, vaccination, and death records. 
 
The authors found that 6% of symptomatic infection patients had not recovered, and 42% had only partially recovered in their most recent questionnaire. These numbers were higher amongst patients who required hospitalisation (16% and 59% respectively). Lack of recovery was associated with more severe infection (hospitalisation), older age, female sex, socioeconomic deprivation, white ethnicity, and pre-existing conditions including depression and respiratory disease. Compared to unvaccinated participants, vaccinated participants were less likely to report persistence in a range of symptoms, including change in smell or taste; hearing or balance problems; concentration difficulties; or poor appetite. Symptomatic infection was found to be associated with lower quality of life, ongoing impairment across activities of daily living and persistent symptoms. Asymptomatic infection was not found to be associated with adverse outcomes.
 
The authors conclude that these findings are consistent with previous studies. They suggest that these results provide further information on the risk and burden of Long COVID amongst the general population, not just the hospitalised population. The authors also note that the study demonstrated that Long COVID is associated with symptomatic, not asymptomatic, infection.

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Transient receptor potential melastatin 3 dysfunction in post COVID‑19 condition and myalgic encephalomyelitis/chronic fatigue syndrome patients 

Authors: Sasso EM, Muraki K, Eaton-Fitch N, Smith P, Lesslar OL, Deed G, Marshall-Gradisnik S (Griffith University, Australia).
Publication: Molecular Medicine
Link: https://molmed.biomedcentral.com/articles/10.1186/s10020-022-00528-y
 
Previous work by the authors has shown impaired Transient Receptor Potential Melastatin 3 (TRPM3) channel function in the natural killer (NK) cells of ME/CFS patients. The similar symptoms between ME/CFS and post COVID-19 condition, and with both being post-viral syndromes, led these authors to hypothesise that the post COVID-19 condition may also display TRPM3 dysfunction.
 
Participants for this study included five patients with post COVID-19 condition (meeting WHO clinical criteria), five patients with ME/CFS (corresponding with Fukuda, CCC, and ICC definitions), and five healthy controls (HC). Each participant donated blood and completed a questionnaire regarding cognitive problems, location and level of pain, sleep issues, cardiovascular issues, thermostatic irregularities, sensory issues, urinary changes, immune disturbances, and gastrointestinal problems. NK cells were isolated from the blood samples and subjected to patch-clamp testing to determine TRMP3 ion channel activity.
 
As expected from previous studies, NK cells from ME/CFS patients demonstrated a smaller ion channel amplitude than HCs, indicating impaired function. NK cells from patients with post COVID-19 condition were also found to have a smaller amplitude. The addition of ononetin to the samples was used to prove that these ionic currents were from TRPM3 activity. In HC, ononetin inhibited ionic currents, however ME/CFS and post COVID-19 condition samples exhibited minimal effects.
 
Whilst many articles have pointed out similarities between ME/CFS and post COVID-19 condition, the authors claim this is the first post COVID-19 study to discover impaired function in TRPM3 ion channels of NK cells, as found in ME/CFS. The authors suggest the role of these specific ion channels in NK cells could link commonly observed symptoms with pathophysiology. Moreover, this ion channel impairment could result in lowered NK cell cytotoxicity and increased inflammation. The authors hope this pilot study leads to further examination of the causes of the suppressed TRPM3 function, as well as the ways TRPM3 dysfunction differs between ME/CFS, and post COVID-19 condition.

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People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects

Author: Young E
Publication: ABC News
Link: https://www.abc.net.au/news/2022-11-30/invisible-disabilities-routinely-disbelieved/101420680
 
Journalist Evan Young lives with ME/CFS. He says that the disbelief that people with invisible disabilities face has an enormous impact on their lives and can prevent them from accessing the services they need.
 
“For years, I hid my disability from the world — from employers, from friends, from partners and others — fearful of the interrogation I felt was just around the corner. 
 
I'd bought into the myth I wasn't "really" disabled and the belief that referring to myself as such — despite the very real, debilitating challenges I navigate each day — was in some way an insult to people who were more visibly disabled.
 
At that time, my resolve and sense of self died a death by a thousand cuts. 
Fighting the stigma surrounding invisible disability can sometimes be more exhausting or painful than the actual conditions — and sometimes, it stops people from seeking supports they're entitled to access.”

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Calls for greater government support for patients living with invisible illnesses like long COVID

Author: Blackwood F
Publication: ABC News
Link: https://www.abc.net.au/news/2022-12-19/calls-for-support-for-people-living-with-invisible-illnesses/101785812
 
“Invisible conditions shouldn't mean that people feel invisible as a person and unfortunately, that's what happens," said Madeline Lebski, who lives with mast cell activation syndrome. Despite her disability, she has been unable to get financial support.
 
“You try to tell someone who is bed-bound, and has been for maybe up to 10 years, that they are not disabled. It's just ridiculous,” said Emerge Australia CEO Anne Wilson. She said that while a parliamentary inquiry into long COVID has been taking submissions, government response to long COVID did not need to reinvent the wheel. Greater access to government support like Medicare, NDIS and the disability pension was needed.

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