Hi everyone, hope people are enjoying the start of Fall.
Based on some feedback last week, I will try to be making polls a more permanent part of this newsletter like research and media. I think it is important to get the perspective of people currently with LC. I will try to source these from Reddit & Twitter. If you see anything that stands out, feel free to reach out!
I tested longer TL;DRs this week. If people like this, I will continue, otherwise I will move back to shorter versions. Let me know!
Research
Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment
TL;DR:
‘We report findings from an online survey conducted from October to December 2021 of Long Covid-19 patients in the U.S., who use social media platforms to search for information about their condition and exchange reports about their experiences with other affected individuals.’
‘We found through our qualitative coding that an overwhelming majority of short answers reported negative interactions with medical professionals, described in 265 (79%) of responses, as compared to 69 (21%) that mostly described positive interactions.’
‘We also identified three major themes in these reports of negative experiences with medical professionals: dismissal of Long Covid illness reports (n = 114, 34%), prolonged diagnostic journeys (n = 130, 39%), and lack of treatment options for Long Covid (n = 137, 41%).’
Bioinformatics and systems biology approach to identify the pathogenetic link of Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Note: this article was pretty hard to summarize, I would definitely recommend reading it to get a better understanding.
TL;DR:
‘People with acute COVID-19 and with ME/CFS have similar pathological mechanisms such as redox imbalance, systemic inflammation and neuroinflammation, impaired energy metabolism, and a hypometabolic state’
‘Analogously, we gained 1,233 COVID-19-related genes by CTD, GeneCards, and DisGeNET. At the same time, we collected 1,186 Long COVID-related genes using the cutoff criteria…Finally, we obtained nine common genes of ME/CFS and Long COVID by cross-processing the related genes of the two diseases.’
Severe fatigue as symptom of long COVID is characterized by increased expression of inflammatory genes in monocytes, increased serum pro-inflammatory cytokines, and increased CD8+ T-lymphocytes. A putative dysregulation of the immune-brain axis, the coagulation process, and auto-inflammation to explain the diversity of long COVID symptoms
[This article is pre-print and the abstract was the only portion made public]
TL;DR:
‘Fatigued patients showed increased expression of inflammatory genes in monocytes, increased serum IL-6, TNF-α, galectin-9, and CXCL10, and increased CD8+ T-lymphocytes compared to HCs.’
‘Moderately severe patients showed reduced CD45RO- naive CD4+ T-lymphocytes and CD25+FOXP3+ regulatory CD4+ T-lymphocytes and limited monocyte and serum (galectin-9) inflammation.’
The epidemiology of long COVID in US adults two years after the start of the US SARS-CoV-2 pandemic
TL;DR:
‘We conducted a probability-based, cross-sectional survey, in English and Spanish, between June 30 and July 2, 2022, of 3,042 adults living in the United States (US)’
‘The standardized prevalence of long COVID was highest among respondents who were aged 25-34 (10.0% [6.8-14.6%]), 35-44 (9.0% [6.1-13.1%]), female (9.4% [7.7-11.6%]), White non Hispanic (NH) (8.7% [7.1-10.7%]), had a household income of $20,001-60,000 (8.8% [6.6-11.6%]) or 60,001-100,000 (8.5% [6.1-11.7%]), were employed (8.9% (7.2-11.0%), or reported having comorbidities (10.3% [7.8-13.4%]) (Table 1).’
‘The proportion of respondents with long COVID reporting a reduced ability to carry out daily activities’
‘Using a population-representative sample of adults living in the US, we estimate that approximately 18.5 million adults, 7.3% (95% CI: 6.1-8.5%) of the US adult population, was experiencing long COVID’
Risk of Long Covid in people infected with SARS-CoV-2 after two doses of a COVID-19 vaccine: community-based, matched cohort study
TL;DR:
‘‘Long Covid symptoms of any severity were reported by 294 double-vaccinated participants 23 (prevalence 9.5%; 95% CI: 8.5% to 10.6%) versus 452 unvaccinated participants (14.6%; 24 13.4% to 15.9%), and activity-limiting symptoms by 170 (5.5%; 4.8% to 6.4%) and 268 25 (8.7%; 7.7% to 9.7%) participants, respectively’
‘found that receiving two COVID-19 vaccinations at least two weeks before SARS-CoV-2 24 infection was associated with a 41% decrease in the odds of developing Long Covid 25 symptoms at least 12 weeks later, relative to not being vaccinated when infected.’
Media
WHO urges action as 17M long COVID cases estimated in Europe region
TL;DR:
‘Around 17 million people have been stricken with long COVID in the first two years of the pandemic across the European region, according to modeling conducted for the World Health Organization.’
‘Partnering with Long COVID Europe, a network of patients' associations, WHO Europe wants to see clearer reporting of cases, greater research into the complex condition, and rehabilitation that is evidence-based.
Globally, nearly 145 million people suffered from long COVID in the first two years of the pandemic, according to the modeling from the Institute for Health Metrics and Evaluation at the University of Washington.’
New survey suggests reinfection worsens Long COVID
TL;DR:
‘The survey was sent out to people with Long COVID in 30 countries including the UK, US, France and Canada and was open from 4 April 2022 to 19 June 2022. Responses were received from 484 adults and 112 children and young people who’d had at least two COVID-19 infections.’
‘In those who still had Long COVID at the time of reinfection, 80% saw their symptoms worsen vs. 10% who saw their Long COVID symptoms improve. Around 85% saw old symptoms return or new additional symptoms vs. 10% who had a resolution or improvement of symptoms.’
Inside one neurologist’s quest to solve the mystery of COVID’s most puzzling complication.
TL;DR:
‘The upshot: There may be no correlation between the severity of your COVID case and the lasting effect on your brain. You thought COVID felt like having a cold? Great, but you still may not know what the virus has done, or is doing, to your body.’
‘Long COVID is now the country’s third leading neurological disorder, the American Academy of Neurology declared in July. As of the end of May, there were 82.5 million COVID survivors in the United States, and 30 percent of them — about 24.8 million — were considered “long-haulers.”’
‘Koralnik complains that no government money has been earmarked specifically for research into long COVID’s significant neurological manifestations, and that the NIH hasn’t assigned a neurologist to review such grant applications. “Therefore, it’s been very difficult, if not impossible, to get funded for the research for neuro-COVID,” he says.’
‘“This is the most important health crisis in our lifetime, hopefully, and the fact that there hasn’t been a more comprehensive response outside of the RECOVER initiative is really mind-boggling,” he says.’
Polls:
follow up to who's working poll... how do you guys who work full time still do it?
BTW the article that was in pre-print now has the full article available to read.