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#pwLC

11 posts5 participants0 posts today
Public
ahimsa

🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day

This video from Laurie Jones, executive director of #MEAction, invites you to join our protest in Washington, DC, or online

Please join us - we need as many folks as possible!

More details here:

meactions.org/millionsmissing2

Thank you! ❤️

(see replies for full text of the video)

@mecfs
@longcovid
@disability

#MEcfs#PwME#LongCovid
Public
Tom Kindlon

UK: A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

Screenshot is from the latest Science for ME weekly update

Links:
psp-me.co.uk/campaign-strategi

s4me.info/threads/uk-a-proposa

meresearch.org.uk/academics-re

organise.network/actions/petit

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

UK A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform "A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS." The proposal is for a government funded group of research hubs with a single coordinating centre. Proposal | Thread with links to related documents MERUK article | Thread Signatories are invited for an open letter to the UK government supporting the proposal. Letter | Thread
Public
Tom Kindlon

Marit Stafseth has written a thorough opinion piece where she's criticising the psychosomatic approach to Long Covid from the Oslo Chronic Fatigue Network

Screenshot is from the latest Science for ME weekly update

Links to translations:
translated.turbopages.org/prox
translated.turbopages.org/prox

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

Norway Board member of the Norwegian Covid Association Marit Stafseth has written a thorough opinion piece in Forskersonen where she's criticising the psychosomatic approach to Long Covid from the Oslo Chronic Fatigue Network. It brings us nowhere and enough is enough. Chairman of the network professor Silje Reme has written a response where she disagrees and claims their model of "predictive processing" brings new understanding of persistent symptoms. Stafseth l Reme l Thread
Public
Tom Kindlon

Donated

David Tuller DrPH @david has shown he has a:
-good skill set for this type of work

-good knowledge base from following the field closely for many years

-an appetite as it can be very draining

Proponents of exercise/psychologicalisation/etc are still around

crowdfund.berkeley.edu/project

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

David Tuller's Trial by Error Spring 2025 Virology blog logo Image Share to Maximize IMPACT $36,830 54% Raised toward our $68,000 Goal 282 Donors 9 days left Project ends on May 05, at 11:59 PM PDT Project Owners Project Owner Image
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

Long #COVID prevalence and risk factors in adults residing in middle- & high-income countries

nature.com/articles/s43856-025

"Symptoms of #longCOVID are reported in a quarter of cases of symptomatic #COVID19 in this study"

Screenshot is from latest Science for ME weekly update

#PASC #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

BMJ Global Health Long COVID prevalence and risk factors in adults residing in middle- and high-income countries: secondary analysis of the multinational Anti-Coronavirus Therapies (ACT) trials — "Symptoms of long COVID are reported in a quarter of cases of symptomatic COVID-19 in this study and were significantly more prevalent in participants from countries with lower income status and in patients of Arab/North African ethnicity."
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.
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