tomkindlon , to AusCOVID19 group
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tomkindlon OP ,
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2/
"While pacing and energy conservation was a necessary strategy, participants also spoke of the consequences that pacing had on their ability to work, engage in social activities (having to decline at last minute depending on energy level, uncertainty of crashes).

Pacing sometimes involved prioritization and sacrifice, scaling back their activities to the bare minimum to manage their challenges with daily activities. (contd)"

@longcovid

tomkindlon OP ,
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3/

"(Contd) While pacing was an essential skill for many, it was a constant balancing act , that also came at a cost on their productivity, satisfaction, and overall feelings of fulfillment"

@longcovid

@covid19

tomkindlon OP ,
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5/

"A notable feature of episodic disability in the context of Long COVID in this study was PESE or PEM which transcended physical, cognitive and mental-emotional dimensions, highlighting the ability of the framework to encompass critical features of disability experienced in the context of "

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tomkindlon , to AusCOVID19 group
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tomkindlon OP ,
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3/
Figure S-1 Definition figure: 2024 NASEM Long COVID definition

From:
A new definition for Long COVID that has been launched today by the National Academies in the US
https://nap.nationalacademies.org/cart/download.cgi?record_id=27768

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tomkindlon OP ,
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4/
"Frequencies of new onset symptoms (in )

Among participants with , the most common symptoms were post-exertional malaise (87%), fatigue (85%), brain fog (64%), dizziness or lightheadedness (62%), GI (59%), & palpitations (57%)."

From pp.46

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  • tomkindlon OP ,
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    5/
    "National Academies Issue New Broad Definition of Long COVID"

    On the Medscape website widely used by healthcare professionals

    https://www.medscape.com/viewarticle/national-academies-issue-new-broad-definition-long-covid-2024a1000ayc (may require free registration)

    Includes a statement from Drs Lucinda Bateman & Brayden Yellman

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  • tomkindlon , to MECFS group
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    tomkindlon , to MECFS group
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    Extract from comments by Dr Binita Kane in this popular Guardian article today:

    "‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with ."
    "Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"

    https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

    @mecfs

    @longcovid

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  • tomkindlon , to NoVID
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    Emerge Australia Research Digest | Issue 106
    https://www.emerge.org.au/researchdigest/research-digest-issue-106/

    3 out of the 4 papers look at groups after Covid infection; the 4th paper looks at a group after Epstein-Barr virus infection

    Hashtags:
    @longcovid
    #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
    #MEcfs #CFS #PwME #LongCovidKids @mecfs
    @covid19 #Coronavirus
    #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
    #ChronicFatigueSyndrome

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    May 2 Australian paper

    Blood brain barrier disruption and glutamatergic excitotoxicity in post-acute sequelae of infection cognitive impairment: potential biomarkers & a window into pathogenesis

    Free:
    https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1350848/full

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    2/
    "We have undertaken a comprehensive proof-of-concept prospective case–control study to investigate parallel changes in blood brain barrier permeability, neurochemicals, & white matter microstructure changes in CI [cognitive impairment] patients"

    Hashtags:
    @longcovid

    @covid19 @auscovid19

    tomkindlon , to longcovid group
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    Cerebral microstructural alterations in Post-COVID-condition are related to cognitive impairment, olfactory dysfunction and fatigue

    Free full text:
    https://www.nature.com/articles/s41467-024-48651-0

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    1/

    tomkindlon OP ,
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    3/

    "(Contd) In line with this assumed chronicity, 85% of patients reporting complaints two months after COVID-19 still reported symptoms one year after their symptom onset"

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    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    4/

    "we applied the advanced imaging technique [Diffusion Microstructure Imaging] to uncover microstructural changes after infection, with the observation of different patterns in a cohort of patients with and without PCC [Post-COVID-condition]"

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    @covid19
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    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    I haven't read the full text myself but it looks sympathetic:

    "Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19"

    Free full text:
    https://www.sciencedirect.com/science/article/pii/S0882596324002057

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

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

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    The Australian ME/CFS & (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS and Long , as well as healthy volunteers

    Link in image
    https://ausmeregistry.org/

    So far "11 projects Australia-wide utilising the AusME Registry"

    @mecfs
    @longcovid


    @auscovid19

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