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#LongCovid

84 posts64 participants4 posts today
Public
Invisible Marcel 🌀

Ever since I’ve contracted long COVID, I’ve started to resent driving long distances, because they tire me out so much more than before. And yet every Wednesday I have to drive to the office. 115-120km. And for some reason today I’m extra exhausted. I just want to sleep. But I can’t. I have to work. Wish me luck. #LongCovid #CovidIsNotOver

Public
Anti. 🐘

"· Children and adolescents face a significantly increased risk of Long COVID following reinfections with SARS-CoV-2
· Another study in Behavioral Sciences showed #LongCOVID also affects language proficiency in children.
· A small observational NIH study is recruiting to study if people with Long COVID have persistent SARS-C0V-2 remnants in their bodies."

thesicktimes.org/2025/04/01/re

The Sick Times - Chronicling the Long Covid crisis · Research updates, April 1 - The Sick TimesChildren and adolescents face a significantly increased risk of Long COVID following reinfections with SARS-CoV-2, according to a new National Institutes of Health (NIH) RECOVER preprint shared on MedRxiv. The study assessed 465,000 children and adolescents under 21 years old using electronic healthcare records from the NIH RECOVER study, focusing on those infected in 2022
#research#COVID19
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Tom Kindlon

(UK)
"I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME & #longCovid ..."

threadreaderapp.com/thread/190

#MEcfs #chronicillness #Spoonies @mecfs @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

miss m Profile picture miss m @FatiguedStill 14h • 15 tweets • 2 min read • Read on X Last night I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME and long Covid 🧵 People with ME and long Covid will only receive points for cooking, washing and dressing. It's unlikely we'll receive points in any other activity. Few applicants will be awarded points for eating and drinking. It's viewed that if you can grip cutlery, no matter how much pain you're in or how long it takes you to eat, then you are independent. Only applicants with eating disorders or a paralytic hand will be awarded points.
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ahimsa

"The History of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign"

thesicktimes.org/2025/03/31/th

This campaign was inspired by George Monbiot who called the history of mistreatment of people with Myalgic Encephalomyelitis (ME) the “greatest medical scandal of the 21st century”

Note: Most patients in the USA get a diagnosis of ME/CFS, not ME. CDC info here:

cdc.gov/me-cfs/about/index.htm

As Monbiot wrote, ME still has no approved treatments decades after being first recognized. This lack of scientific progress is too often explained as patients unwilling to get better or an illness too complicated to understand. But in reality, an intentional campaign has obstructed scientific breakthroughs and cures and stigmatized the illness. As a result, medical professionals don’t just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever.
#MEcfs#MyalgicEncephalomyelitis#ChronicIllness
Public
Anti. 🐘

#LongCOVID

Has anyone ever experienced a delayed crash, is this possible?

Over a week ago i had a long (but fun) day. In the days that followed i had some muscular and skeletal issues. But it was bearable. Thought i got lucky.

Only yesterday a "proper" crash started, with a headache, swollen lymph nodes, a grippal feeling and air hunger.

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Jon Hancock

Don't play a great many computer games these days, but having learned that I can use a cloud-based gaming service that avoids the need to buy a more modern computer I've been giving Atomfall a go.

Great fun on the whole, although today I found my long covid symptoms were really getting in the way. I had to get an Xbox controller to use the games, not a joystick I'm familiar with, and there was too much confusion in trying to remember which of the many, many buttons did what. Yesterday went far more smoothly, so I know it's not purely down to me being distinctly sub-mediocre at these games. Packed up for the day after I lost count of how many times I'd been trounced by outlaws.

I do need to read the instructions again, though, as I'm discovering functions I'd missed. For instance, it turns out that my character can throw knives and similar weapons. I discovered this when facing an outlaw, as I pressed something and watched as Our Hero tossed the knife—the knife he was trying to fend off an attacker with—into some dense shrubbery, thus neatly disarming himself.

#Games#VideoGames#Atomfall
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Allysse Riordan

Today I learned about #30DaysOfBiking
The idea is simple: ride a bike every day in April.

Due to #LongCovid, I've not ridden my bike in weeks (months?). Of all the things that have changed, my bicycle is the one thing I miss with a burning sadness still.

Today, I had to go to the pharmacy and my partner is at work. So I rode my bike. It was short but it was so lovely and delightful and gosh how I miss pootling about on a bike.

I doubt I'll manage 30 days of cycling, but I'll try little bits.

A horizontal colour photograph of a baby blue bicycle resting against wooden railings. Behind them is a chaos of branches and young leaves. The scene is bathed in sun.
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Aphrodite ☑️ :boost_ok:

tfw when you can’t tell if your body is telling you to fork off for burning through your spoons because of #longCovid or because you literally uprooted your entire life last week or the jet lag is kicking your backside or your gi is upset because you had to feed it american food for two weeks or…

Replied to Denis - The COVID info guy -
Public
datum (n=1)

@DenisCOVIDinfoguy they also cite pubmed.ncbi.nlm.nih.gov/358102

which has this absolute adjective of a hypothesis:

SARS-CoV-2 may bind to ACE2 in order to enter the host brainstem cell and change baroreflex sensitivity

because

The integral parts of the brain renin-angiotensin system, as ACE2 enzyme, are highly expressed in the brainstem, which may also be involved in baroreflex sensitivity, playing an important role in HRV.

which would help explain POTS!!

PubMedPotential autonomic nervous system dysfunction in COVID-19 patients detected by heart rate variability is a sign of SARS-CoV-2 neurotropic features - PubMedIncreasing evidence strongly support that the newly identified severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) leads to the development of COVID-19-associated central nervous system (CNS) manifestations. The presence of SARS-CoV-2 viral protein in the brainstem, which includes cardiovas …
#COVID#COVID19#SARS2
Replied to Denis - The COVID info guy -
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datum (n=1)

@DenisCOVIDinfoguy I was just reading this!

nature.com/articles/s41598-024 has tidbits that range from interesting to wow

non-hospitalized individuals who had COVID-19 present a decrease in heart rate variability with a predominance of the sympathetic nervous system; (2) above all, those evaluated early in the first weeks after infection have less parasympathetic modulation; (3) moderate to large effect sizes were found when comparing groups; (4) the time after diagnosis influences positively while age is negatively associated with HRV parameters

and in a bit of detail:

the LF band, which reflects both modulations but with greater sympathetic predominance, showed a significant increase in the evaluated group during the first weeks after infection, with a tendency to decrease over time. In contrast, the HF band, which reflects parasympathetic activity, exhibited a significant reduction in those evaluated early, indicating diminished parasympathetic activity. However, no increase in this variable was observed over time.

which they immediately explain:

This behavior can be attributed to the different recovery dynamics of the sympathetic and parasympathetic nervous systems after stressors like infection. Sympathetic modulation tends to normalize more quickly following the acute stress response, whereas parasympathetic modulation requires more time to recover, especially after inflammatory states. Additionally, COVID-19 induces vagal suppression, which reduces parasympathetic activity and prolongs its recovery period

vagal refers to the vagus nerve folks, stay calm

NatureImpact of COVID-19 on heart rate variability in post-COVID individuals compared to a control group - Scientific ReportsThis study investigated the impact of mild COVID-19 on HRV in groups stratified by time after infection and to compare to a healthy group of the same age without previous virus infection and without need of hospitalization. This is a cross-sectional study. We divided the sample into four groups: control group (CG) (n = 31), group 1 (G1): ≤6 weeks (n = 34), group 2 (G2): 2–6 months (n = 30), group 3 (G3): 7–12 months (n = 35) after infection. For HRV analysis, we used the indices of linear (time and frequency domain) and non-linear analysis. For comparisons between groups, ANOVA one way test or Kruskal–Wallis was used according to the data distribution. The effect size was calculated based on Cohen’s d or η2. Simple and multiple linear regressions were performed to investigate the interaction between clinical outcomes and HRV parameters. A total of 130 individuals were included. Groups G1 and G2 showed less parasympathetic modulation when compared to CG (p < 0.05), while G3 showed an increase in parasympathetic modulation when compared to G1 (p < 0.05). Moderate to large effect sizes were found according to Cohen d or η2. The multiple linear regression models identified age and infection duration as significant predictors for RMSSD (adjusted R2 = 0.227) and SD1 (adjusted R2 = 0.242), while age was significant for SDNN (adjusted R2 = 0.213). BMI, hypertension, and dyslipidemia were non-significant in all models. For HF (n.u.), infection duration was consistently significant, with stress emerging as a predictor in Model 2 (adjusted R2 = 0.143). The recovery time since diagnosis and age influences recovery from HRV, suggesting a transient effect of the disease on the autonomic nervous system.
#COVID19#COVID#heart
Public
Tom Kindlon

Brain Structural Abnormalities in Patients with #PostCOVID -19 Headache

mdpi.com/2035-8377/17/4/50

Retrospective 30 vs 30 MRI case/control study. "One of our most noteworthy findings is that white matter lesions were identified in 50% of the post- #COVID-19 group, compared to 20% in the control group”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #CovidBrain @covid19 #COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver #auscovid19 @auscovid19

Public
Tom Kindlon

The US administration has proposed many cuts that may affect ME/CFS or #LongCovid research

Image is from latest Science for ME weekly update

Links:

science.org/content/article/sa

scientificamerican.com/article

thesicktimes.org/2025/03/28/up

fiercebiotech.com/research/stu

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #postcovid #postcovid19 #PostCovidSyndrome #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
@auscovid19

USA - The current administration has proposed many cuts to the NIH and other departments. Cuts or closures may affect ME/CFS or Long Covid research. The final decision on some cuts is still pending. Science "Saying ‘pandemic is over,’ NIH starts cutting COVID-19 research" Article | Thread Scientific American "HHS’s Long COVID Office Is Closing. What Will This Mean for Future Research and Treatments?" Article | Thread The Sick Times "UPDATE: RECOVER Long COVID pathobiology grants restored" Article | Thread Fierce Healthcare 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo Article | Thread
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Denis - The COVID info guy -

🇺🇸 USA: ‘Shrinking my world really small’: How New Yorkers are coping with long COVID.

"One of the most common reported symptoms is chronic, debilitating fatigue. That’s often paired with a punishing condition known as post-exertional malaise — a crash that comes after too much mental or physical activity."

Source: gothamist.com/news/shrinking-m

#longCOVID @auscovid19

Alisha with her husband and dog at home in Brooklyn. Because of chronic fatigue associated with long COVID she has to spend much of the day reclining.
Gothamist · ‘Shrinking my world really small’: How New Yorkers are coping with long COVIDAn estimated 500,000 New Yorkers suffer from COVID’s lingering effects, with 1 in 5 saying the condition significantly limits their activities.
Public
Bass #AlleBurgers #EcoHumanist

#ejustin46 on X wrote:

For CHILDREN, the risk of LONG COVID after a SECOND INFECTION is 2.08 TIMES GREATER compared to the FIRST INFECTION.
medrxiv.org/content/10.1101/20

#LongCovidKids #LongCovid @longcovid @alleburgers @whn @ABScientist

medRxiv · Reinfection with SARS-CoV-2 in the Omicron Era is Associated with Increased Risk of Post-Acute Sequelae of SARS-CoV-2 Infection: A RECOVER-EHR Cohort StudyIMPORTANCE Post-acute sequelae of SARS-CoV-2 infection (PASC) remains a major public health challenge. While previous studies have focused on characterizing PASC and identifying its subphenotypes in children and adolescents following an initial SARS-CoV-2 infection, the risks of PASC with Omicron-variant reinfections remain unclear. Using a real-world data approach, this study investigates the risks of PASC following reinfections during the Omicron phase in the pediatric population. OBJECTIVE To investigate the risks of PASC diagnosis and 24 PASC symptoms and conditions after reinfection of SARS-CoV-2 during Omicron period in the pediatric population. DESIGN, SETTING, AND PARTICIPANTS This retrospective cohort study used data from the RECOVER consortium comprising 40 children's hospitals and health institutions in U.S. between January 2022 and October 2023. EXPOSURES A second SARS-CoV-2 infection, confirmed by a positive polymerase-chain-reaction (PCR) or antigen tests, or a diagnose of COVID-19, occurring at least 60 days after the initial infection, compared to the initial infection. MAIN OUTCOMES AND MEASURES PASC was identified using two approaches: (1) the ICD-10-CM diagnosis code U09.9 and (2) a symptom-based definition including 24 physician-identified symptoms and conditions. Absolute risks of incident PASC were reported, and relative risks (RRs) were calculated by comparing the second infection episode with the first infection episode groups using a modified Poisson regression model, adjusting for demographic, clinical, and healthcare utilization factors through exact matching and propensity scoring matching. RESULTS A total of 465,717 individuals under 21 years old (mean [SD] age 8.17 [6.58] years; 52% male) were included. Compared to the first infection, a second infection was associated with significantly increased risk of an overall PASC diagnosis (RR, 2.08; 95% confidence interval [CI], 1.68-2.59), and with many specific conditions including: myocarditis (RR, 3.60; 95% CI, 1.46-8.86); changes in taste and smell (RR, 2.83; 95% CI, 1.41-5.67); thrombophlebitis and thromboembolism (RR, 2.28; 95% CI, 1.71-3.04); heart disease (RR, 1.96; 95% CI, 1.69 to 2.28); acute kidney injury (RR, 1.90; 95% CI, 1.38 to 2.61); fluid and electrolyte (RR, 1.89; 95% CI, 1.62 to 2.20); generalized pain (RR, 1.70; 95% CI, 1.48 to 1.95); arrhythmias (RR, 1.59; 95% CI, 1.45-1.74); abnormal liver enzyme (RR, 1.56; 95% CI, 1.24 to 1.96); fatigue and malaise (RR, 1.50; 95% CI, 1.38 to 1.64); musculoskeletal pain (RR, 1.45; 95% CI, 1.37 to 1.54); abdominal pain (RR, 1.42; 95% CI, 1.34 to 1.50); postural orthostatic tachycardia syndromes (POTS)/dysautonomia (RR, 1.35; 95% CI, 1.20 to 1.51); cognitive functions (RR, 1.32; 95% CI, 1.15 to 1.50); and respiratory signs and symptoms (RR, 1.29; 95% CI, 1.25 to 1.33). The risks were consistent across various organ systems, including cardiovascular, respiratory, gastrointestinal, neurological, and musculoskeletal systems. CONCLUSIONS AND RELEVANCE Children and adolescents face significantly higher risk of various PASC outcomes after reinfection with SARS-CoV-2. These findings suggest a cumulative risk of PASC and highlight the urgent need for targeted prevention strategies to reduce reinfections, which includes an increased emphasis on initial or re-vaccination of children. ### Competing Interest Statement Dr. Jhaveri is a consultant for AstraZeneca, Seqirus, Gilead, Sanofi; receives an editorial stipend from the Pediatric Infectious Diseases Society; research support from GSK; and royalties from Up To Date/Wolters Kluwer. All other co-authors have no conflicts of interest to report. ### Funding Statement This research was funded by the National Institutes of Health (NIH) Agreement OT2HL161847-01 as part of the Researching COVID to Enhance Recovery (RECOVER) program of research. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethnics committee/IRB of University of Pennsylvania waived ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request.
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Tino Eberl

Beim fünften Runden Tisch in #Berlin wurden Fortschritte im Umgang mit #LongCovid vorgestellt.

Laut #Gesundheitsminister #Lauterbach zeigen erste Maßnahmen Wirkung, auch wenn es noch keine Heilung gibt. Besonders die #Forschung in #Deutschland hebt sich europaweit hervor.

73 Millionen Euro fließen in Versorgungsprojekte, weitere 45 Millionen in die Betreuung von Kindern und Jugendlichen. #Pharmaunternehmen investieren laut Lauterbach bisher zu wenig.

zdf.de/nachrichten/politik/cor

ZDFheute · Long Covid: Lauterbach sieht erste Erfolge für PatientenBy ZDFheute
#MECFS#PostCovid
Public
ahimsa

“Wake Up and Smell the C*VID: An evening without Eric Bogosian”: new play takes aim at NYC mask ban and more

thecanary.co/global/world-news

"As New York State’s budget deadline looms, so too does the specter of a proposed mask ban …"

"Wake Up and Smell the C*VID isn’t a typical play—it’s an intervention. A rupture. A refusal.

It refuses the erasure of an ongoing mass disabling event."

Canary · “Wake Up and Smell the C*VID: An evening without Eric Bogosian”: new play takes aim at NYC mask ban and more“Wake Up and Smell the C*VID: An evening without Eric Bogosian”: new play takes aim at NYC mask ban and more from Canary on 31 March 2025
#COVID#COVID19#LongCovid
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