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#pwLC

11 posts4 participants2 posts today
Public
Tom Kindlon

🧵
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships

emerge.org.au/how-to-support-y

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

1/

How to support your friend who lives with ME/CFS or long COVID Home / MECFS Information / How to support your friend who lives with ME/CFS or long COVID Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
Public
Tom Kindlon

Reporting on ME, ME/CFS, Long Covid, & so on... crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months @david

crowdfund.berkeley.edu/project

Screenshot is from the latest Science for ME weekly update

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

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.
Continued thread
Public
Tom Kindlon

2/
"What we saw in people with #longCOVID is they were burning 20, 30 percent more energy than someone that we would expect for their height, weight, gender and age," he said. "So even though we were asking them to sit very still and not use any energy at all, their bodies were working really, really hard to maintain that."

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

Public
Tom Kindlon

From Sweden:

Post #COVID19 among young adults– prevalence & associations with general health, stress, & lifestyle factors

bmcpublichealth.biomedcentral.

"Almost 4% of young adults with previous self-reported #COVID_19 had ongoing symptoms of PCC 3 years after the onset of the pandemic”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain
@covid19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver #auscovid19 @auscovid19

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

Associations of epigenetic aging & #COVID19: A 3-year longitudinal study

link.springer.com/article/10.1

"#COVID_19 infection significantly increased the speed of aging assessed by DNAmGrimAge, DNAmGrimAge2, & DNAmFitAge compared to non-infected subjects during the 3 years”

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

SpringerLinkAssociations of epigenetic aging and COVID- 19: A 3-year longitudinal study - GeroScienceAging and COVID- 19 are known to influence DNA methylation, potentially affecting the rate of aging and the risk of disease. The physiological functions of 54 volunteers—including maximal oxygen uptake (VO₂ max), grip strength, and vertical jump—were assessed just before the COVID- 19 pandemic and again 3 years later. Of these volunteers, 27 had contracted COVID- 19. Eight epigenetic clocks were used to assess the rate of aging during the 3-year period: DNAmAge showed accelerated aging, and five clocks showed slowed aging (DNAmAgeSkinBlood, DNAmAgeHannum, DNAmFitAge, PhenoAge, and DNAmTL). When we considered only females, we observed a stronger effect in the increase of DNAmAge acceleration, while we observed slowed aging in the case of SkinBloodClock, and DNAmTL. The methylation of the promoter region of the H1 FNT genes, which encodes testis-specific histone H1 family member N (H1fnt) and plays a crucial role in spermatogenesis decreased the most significantly. In contrast, the promoter of CSTL1, which encodes Cystatin-like 1, showed the most significant increase. We found that having COVID- 19 during the 3-year study period significantly increased the progress of aging assessed by DNAmGrimAge, DNAmGrimAge2, and DNAmFitAge (p = 0.024, 0.047, 0.032, respectively, after we adjusted the analysis for baseline variables). The data suggest that COVID- 19 may have a mild long-term effect on epigenetic aging.
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

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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

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…
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