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#pwLC

15 posts4 participants0 posts today
Public
Tom Kindlon

#LongCovid #PASC

From the Netherlands:

Health outcomes up to 3 years ...

"Specifically, while some health outcomes improved over time, self-reported fatigue and cognitive problems worsened between the second and third year."

thelancet.com/journals/lanepe/

Image is from latest Science for ME weekly update

@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver

The Lancet Regional Health – Europe Health outcomes up to 3 years and post-exertional malaise in patients after hospitalization for COVID-19: a multicentre prospective cohort study (CO-FLOW) — Julia C. Berentschot et al. "In this multicentre prospective cohort study with follow-up up to 3 years after hospitalization for COVID-19, the findings showed that patient experienced persisting and even worsening of several health issues up to 3 years. Specifically, while some health outcomes improved over time, self-reported fatigue and cognitive problems worsened between the second and third year."
Public
Tom Kindlon

"the results from this analysis suggest among people who were tested for #COVID19, those with a positive test experienced an increased rate of diagnosis of infectious illnesses in the 12 months following"

thelancet.com/journals/laninf/

Image is from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID #COVID_19 #COVIDー19 #SARSCoV2
@auscovid19 #auscovid19

The Lancet Infectious Diseases Rates of infection with other pathogens after a positive COVID-19 test versus a negative test in US veterans (November, 2021, to December, 2023): a retrospective cohort study — Miao Cai et al. "the results from this analysis suggest that among people who were tested for COVID-19, those with a positive test experienced an increased rate of diagnosis of infectious illnesses in the 12 months following"
Public
Tom Kindlon

ICU participants' hospitalisation conferred them status as legitimate patients in ‘medically clear and understandable ways’ whereas LC participants' ‘patienthood’ was neither evidenced nor authenticated"
onlinelibrary.wiley.com/doi/10

Image is from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Health Expectations Rethinking ‘Recovery’: A Comparative Qualitative Analysis of Experiences of Intensive Care With COVID and Long Covid in the United Kingdom — Alice MacLean et al. "Key differences in ‘worlds of illness’ stemmed from the fact that ICU participants' hospitalisation conferred them status as legitimate patients in ‘medically clear and understandable ways’ whereas LC participants' ‘patienthood’ was neither evidenced nor authenticated in the same way."
Public
Tom Kindlon

From Germany:

Abnormal Coronary Vascular Response in Patients with #LongCOVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance

sciencedirect.com/science/arti

Image is from latest Science for ME weekly update

Hashtags:
@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19

1/

Journal of Cardiovascular Magnetic Resonance Abnormal Coronary Vascular Response in Patients with Long COVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance — Weberling et al. "This pilot study is the first to show a blunted hemodynamic and myocardial oxygenation response to vasoactive breathing maneuvers during Oxygenation-sensitive CMR in long COVID patients. This simple, non-invasive test may be the first to objectify complaints of affected patients and indicates evidence for the crucial role of the endothelium in the pathophysiology of long COVID."
Public
Tom Kindlon

The use of oral anticoagulation at the time of acute #COVID19 infection & subsequent development of #longCOVID / post-acute sequelae of #SARSCoV2 infection

link.springer.com/article/10.1

"We found no evidence that prevalent OAC at the time of acute #COVID_19 infection was associated with reduced risk of LC/#PASC”

@longcovid
#PwLC #PostCovidSyndrome #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID @novid@chirp.social #novid @novid@a.gup.pe #auscovid19

SpringerLinkThe use of oral anticoagulation at the time of acute COVID-19 infection and subsequent development of long-COVID/post-acute sequelae of SARS-CoV-2 infection - Journal of Thrombosis and ThrombolysisLong COVID (LC) or post-acute sequelae of SARS-CoV-2 infection (PASC) is defined as ongoing, relapsing or new symptoms/conditions persisting after an acute COVID-19 infection. Given the potential role of oral anticoagulants (OAC) in treating thrombotic sequelae of LC/PASC, we investigated whether prevalent OAC use at the time of acute COVID-19 infection was associated with reduced development of LC/PASC. Retrospective cohort study within the TriNetx network. The primary cohort was defined as adults with a confirmed diagnosis of COVID-19. We defined OAC users as those who had received OACs (either direct-acting OACs [DOACs] or vitamin K antagonists [VKA]) in the preceding 3-months and non-users as those without OAC use within the previous 12-months. The primary outcome was a composite of 9 features associated with LC/PASC We identified 38,409 DOAC users, 19,243 VKA users, and 2,329,771 non-OAC users with acute COVID-19 infection. After successful propensity score matching (PSM), we found an increased risk of LC/PASC features in those receiving DOAC compared to non-OAC (HR [95% CI] 1.50 [1.35 to 1.68], p < 0.0001), and in VKA users compared to non-OACs (HR [95% CI] 1.98 [1.78 to 2.20], p < 0.0001), while DOAC users were at reduced risk compared to VKA users (HR [95% CI] 0.71 [0.62 to 0.81], p < 0.0001). We found no evidence that prevalent OAC at the time of acute COVID-19 infection was associated with reduced risk of LC/PASC. Further work is needed to understand whether there is a role for OAC therapy in the management of LC/PASC.
Public
Tom Kindlon

Aotearoa New Zealand: A small step in New Zealand

Writing from Norway, patient/advocate and former HSEQ CEO Nina E. Steinkopf engaged with the Royal New Zealand College of General Practitioners, who investigated and subsequently removed endorsement of a Lightning Process article previously published in NZ Doctor.

melivet.com/2025/04/08/a-small

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MEcfs

MElivet · A small step in New ZealandIn February 2025, a research article was published in the Journal of Family Medicine and Primary Care. The authors claim that the Lightning Process is an effective and harmless treatment for Long C…
Public
Tom Kindlon

Nairobi researchers interviewed 23 Kenyans with #LongCovid and found that disabling fatigue, memory loss, & stigma—often linked to HIV—are widespread.

Many feel dismissed by doctors & turn to online groups for support & recognition.

link.springer.com/article/10.1

@longcovid #PwLC #PostCovidSyndrome #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver #auscovid19

1/

SpringerLinkStigma, Chronicity and Complexity of Living with Long Covid in Kenya - Culture, Medicine, and PsychiatryLiving with a complex chronic illness can be debilitating as people are constantly negotiating new bodily symptoms, constant treatment-seeking, readjustments to identity and routine. In Kenya, millions of people were infected with COVID-19 and surveillance of Long Covid remains limited. We interviewed 23 Kenyans seeking medical care or social support for Long Covid to understand their lived experiences. Participants reported limited access to healthcare; they also described symptoms including disabling fatigue, memory inconsistencies, and acute pain in the muscle, gut, or tissues. However, we found a unique chronic illness stigma—where people did not want to reveal that they had Long Covid because they feared of being perceived to have HIV. Participants reported feeling dismissed or disbelieved by family, friends, and clinicians and turned to online social support groups like Facebook. While some appreciated clinicians who used experimental treatment, others expressed trepidation when treatments caused them to feel sicker. The chronicity and debilitating symptoms of Long Covid may cultivate a unique stigma around the condition and point to a normalization of Long Covid with other chronic conditions, despite limited treatments. A broader understanding of Long Covid symptoms and care must be expanded to include destigmatizing the condition in Kenya.
Public
Tom Kindlon

From Sweden:
#PostCOVID19 among young adults– prevalence & associations with general health, stress, & lifestyle factors

bmcpublichealth.biomedcentral.

"Almost 4% of young adults with previous self-reported #COVID19 had ongoing symptoms of #PCC 3 years after the onset of the pandemic”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain @covid19 #COVIDー19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver

BioMed CentralPost COVID-19 among young adults– prevalence and associations with general health, stress, and lifestyle factors - BMC Public HealthBackground The prevalence of post COVID-19 condition (PCC) after mild infection among young adults is largely unknown, as are its impact on health and lifestyle factors. Objective To assess the prevalence of PCC among young adults and its impact on general health, stress, and changes in lifestyle factors three years after the onset of the pandemic. Methods The study population (n = 2,098) included participants from the population-based cohort BAMSE (aged 27–30 years). PCC symptoms and changes in lifestyle factors during the pandemic were assessed in a questionnaire distributed in September–December 2023 and analyzed cross-sectionally. Stress, physical activity, and general health were also assessed pre-pandemic (2016–2019) and analyzed longitudinally. PCC was defined as ≥ 1 symptom lasting for ≥ 2 months after COVID-19. Results In total, 1,577 (75.5%) reported previous COVID-19. Among these, 166 (10.5%) reported previous and 62 (3.9%) ongoing PCC. The most common ongoing symptoms were altered smell/taste, psychological symptoms, and fatigue. Both pre- and post-pandemic general health differed significantly in relation to PCC in cross-sectional analyzes (all p < 0.05), with the lowest health reported by those with ongoing PCC. Participants with ongoing PCC also had a reduction in well-being in longitudinal analyses (p = 0.04). This group also reported more adverse changes in lifestyle factors and health during the pandemic such as reduced physical activity (p < 0.001) and worsened dietary habits (p = 0.03). However, there was no significant difference in the longitudinally measured perceived stress scale among individuals with PCC. Conclusions Almost 4% of young adults with previous self-reported COVID-19 had ongoing symptoms of PCC three years after the onset of the pandemic. This group reported poorer health and more adverse changes in lifestyle factors than participants without PCC. Targeted healthcare interventions for young adults with PCC are warranted.
Public
Tom Kindlon

(Boston, Massachusetts)
Research study on the effectiveness of abrocitinib vs placebo for improving severe fatigue in adults with Long COVID

Image is from MassME April Newsletter

massmecfs.org/newsletters/922-

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Long COVID Research Study at Beth Israel Deaconess Dr. Dan Barouch at Beth Israel Deaconess is starting a research study on the effectiveness of abrocitinib vs placebo for improving severe fatigue in adults with Long COVID. You might be eligible if you are over 18 years of age, have had Long COVID symptoms for more than 2 months, and have not recently tested positive for COVID-19. Participants will provide blood samples and answer questionnaires during 6 visits over 4 months. Compensation of up to $75 and a parking voucher is available for each study visit. For more information contact: BIDMC-CVVRTRIAL@bidmc.harvard.edu or call 617-735-4610.
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