Photo by Sharon Pittaway on Unsplash
Hi 👋,
Hope everyone who celebrated Halloween enjoyed it!
Some big announcements this week:
Happy to announce that we are rebranding the newsletter from the ‘Long Covid Weekly’ to the ‘Long Covid & ME/CFS Weekly.’ This change was made because those with ME/CFS have fighting the same uphill battle for recognition and treatments for decades 🤝. Supplementary, many people with Long Covid fit the criteria for ME/CFS. All-in-all this is a move grounded in inclusion. The changes will be reflected shortly.
Finally, we are in the early stages of designing a Discord server 💬. Specifically, the Discord would be focused on those within the LC + ME/CFS community interested in scientific advancements and advocacy. Discord is a good app for discussions because it allows users to communicate with each other in real-time. This means that users can have conversations without having to wait for a response, which can make the discussion much more fluid and enjoyable. Additionally, Discord provides a number of features that can make discussions more engaging, such as the ability to add images and videos, as well as voice and video chat. If interested in participating, feel free to message me.
🔍 Research
The role of gut microbiota in etiopathogenesis of
long COVID syndrome
From the paper:
Recent research shows a potential connection between long-term COVID-19 and dysbiosis of the gut flora.
The gut microbiome, the billions of bacteria, fungus, and other microbes that live in the digestive tract, has been linked to COVID-19 severity and may possibly have an impact on the healing process, according to a growing body of research
In COVID-19 patients, opportunistic fungal and bacterial pathogens (Aspergillus, Candida, Actinomyces, Streptococcus, Veillonella, Rothia, and Clostridium) were found to have displaced beneficial microbes/comments like Bifidobacterium romboutsia, Proteobacteria, Collinsella, Actinobacteria Blautia, and Bacteroides [14–16].
My Take: There is growing evidence that the gut plays a major role in the development of many illnesses. The complexity of the gut has made it difficult to produce actionable results. But we will see what the future holds.
Extended coagulation profile of children with Long Covid: a prospective study
From the paper:
In this study, we prospectively evaluated an extended coagulation profile in a cohort of children that either recovered or developed PCC after the initial SARS-CoV-2 infection
In our pediatric cohort, we found that while all median values fell within the normal range, PCC8 children had higher levels of fibrinogen, factor VIII, and Von Willebrand Factor (VWF), though these results were not statistically significant compared with recovered children.
In the meantime, changes in levels of D-dimer could serve as potential biomarkers of PCC to be used in routine practice, since D-dimers are a routine blood test, easy to perform and available in most settings
My Take: Microclots & coagulation appear the most likely Long Covid hypotheses as of right now. Will be curious to see where they go.
Impact of a COVID-19 infection on exercise levels of recreational athletes one- and three-months post-infection
From the paper [ABSTRACT, only]:
Median exercise level at baseline in the COVID-19 group was 3528 (IQR=1488–5760) MET-min/week. One-month post-COVID-19 infection, exercise level dropped 58% (2038 MET-min/week), which partly stabilized to 36% (1256 MET-min/week) below baseline values 3 months post-COVID-19 infection. Moreover, in both the COVID-19 (pre-COVID-19 infection) and non-COVID-19 group exercise levels during the pandemic decreased with ~260 MET-min/week. These results illustrate that even a relatively physically active population of recreational athletes is significantly affected by a COVID-19 infection, particularly those athletes who are overweight
My take: This one hits home for me. I was someone who worked out 5-6 days a week prior to my infection. I have not gone on a run or lifted in nearly 2.5 years. Longing for that feeling once again.
Metabolic disorders and post-acute hospitalization in black/mixed-race patients with long COVID in Brazil: A cross-sectional analysis
From the paper:
Among the biochemical abnormalities detected in this population with long COVID, elevated levels of HbA1c were a frequent finding in individuals without a previous diagnosis of
Together these data suggest that long COVID associated with comorbidities may place patients at increased risk of hospitalization and require close monitoring. However, the data needed for postulating that long COVID exposes patients to a greater risk of post-acute hospitalization are still necessary.
Regardless of disease severity, women presented more residual symptoms as evidenced by higher frequencies of fatigue, chest pain, and myalgia, which agree with previously published data [7, 29]. Women also reported worse quality of life scores across all domains of the EuroQoL (mobility, self-care, usual activities, anxiety/depression, and pain).
📰 Media
I'm a Physician Battling Long COVID. I Can Assure You It's Real
From the article:
Here I am, one of the leading experts in the country on caring for people with long COVID, featured in the national news and having testified in front of Congress, and now I am part of that lived experience. Me — a healthy athlete, with no comorbidities, a normal BMI, vaccinated and boosted, and after an almost asymptomatic bout of COVID-19, a victim to long COVID.
If long COVID is hard for physicians to understand and deal with, imagine how difficult it is for patients with no expertise in this area.
It is exponentially harder for those with fewer resources, time, and health literacy. My lived experience with long COVID has shown me that being a patient is never easy. You put your body and fate into the hands of trusted professionals and expect validation and assistance, not gaslighting or gatekeeping.
Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS?
From the article:
Historically, many illnesses that impact women were overlooked until a biomarker was discovered or an accurate diagnostic test was developed. “Many women with multiple sclerosis weren’t believed until the MRI machine was invented,” says Pollack. “Fibromyalgia often wasn’t taken seriously, and it turns out that about half of them have small fiber neuropathy—which by the way, is also frequently comorbid with ME/CFS.”
Iwasaki believes that the growing research around long COVID could also shine light on the mechanisms behind other chronic illnesses like ME/CFS. In her own research, she plans to compare the immune phenotypes of patients who acquired ME/CFS from an unknown infection—in most cases, individuals don’t know what infection triggered their disease—and those struggling after Lyme disease, to those of COVID long haulers. “We want to understand what’s common and what’s different and how to illuminate the disease pathogenesis,” she says.
COVID-19 activates similar response to Parkinson's disease, study suggests
From the article:
UQ researchers studied the effect of SARS-CoV-2 on the brain's immune cells, known as microglia, which are key cells involved in the progression of brain diseases, such as Parkinson's and Alzheimer's disease.
"We identified that the cells became highly inflammatory, we like to think of them as angry microglia, and they turned on a pathway called the inflammasome, which we have previously shown is linked to certain brain diseases, like Parkinson's and Alzheimer's," Professor Woodruff said.
My Take: Are viral infections the main trigger for illnesses like Parkinsons?
First- thank you so very much for putting this info together every week. I’m a nurse practitioner and also a long-COVID patient now myself so I’m so interested in all of it from both a provider and patient point of view. So thank you!
Also- I’d love to have a Discord space - let us know how we can help and we’re in!
Hello, my MIL is suffering badly from a rash that I and some other people I know had on and off for months. It is a sure way to drive someone insane. I think it’s caused by the virus, and re instigated when around someone who’s got an active case. Nothing seems to help, I tried hydroxyzene, benedryl, oils, baths, ice. I see articles about others having this rash, but nothing about easing the itching. Do you have any information on this?
Thank you
JSR