tomkindlon , to NoVID
@tomkindlon@disabled.social avatar

Insights from an N3C RECOVER EHR-based cohort study characterizing reinfections and

https://www.nature.com/articles/s43856-024-00539-2

"The largest proportion of Long COVID diagnoses occur among individuals with a first reinfection in the Delta epoch. The rate of Long COVID diagnoses has been increasing with each successive Omicron variant"

@longcovid

@covid19
@novid @novid

matthew_dodwell ,

@tomkindlon @longcovid @covid19 @novid @novid
Surely this study just shows most clinical data is from severe infection? I don't believe that my own data and from similar other cases would have ever been recorded, leading to a systemic bias...

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

Press release:
"Brain inflammation triggers muscle weakness after infections: In fruit flies and mice, scientists ID possible way to block muscle fatigue in , other diseases"

https://www.eurekalert.org/news-releases/1050851

Plausible this could also be relevant in ME/CFS

Hashtags:
@longcovid
@mecfs

@covid19

ehashman ,
@ehashman@cloudisland.nz avatar

@tomkindlon @longcovid @mecfs @covid19 anecdotal account: I've been on both classes of drugs (JAKS inhibitor and IL-6 inhibitor) for rheumatoid arthritis and didn't experience much affect on the ME/CFS. Tbh the TNF-a inhibitor that I'm on now has done a lot more, at least for brain fog and very slow physical improvements.

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

🧵
"Why does physical activity exacerbate symptoms in ME/CFS and long Covid patients?"

A second interesting article from Science Norway, this time including info on two-day CPETs & how deconditioning does not explain the findings.

https://www.sciencenorway.no/chronic-fatigue-syndrome-me-physical-activity/why-does-physical-activity-exacerbate-symptoms-in-me/cfs-and-long-covid-patients/2382080

Hashtags:
@mecfs

Hashtags:
@longcovid

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/
    Extract on post-exertional malaise from article


    @mecfs @longcovid

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    4/
    Extract:
    “There is little evidence to suggest that poor fitness is the explanation for PEM – the characteristic worsening of symptoms following exertion – which in many cases does not involve physical
    activity at all …”

    @mecfs @longcovid

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  • tomkindlon , to longcovid group
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  • robotistry ,
    @robotistry@sciencemastodon.com avatar

    @tomkindlon @mecfs @longcovid Useful but frustrating document.

    Neurologically triggered PEM can occur without exceeding a heart rate threshold and is not the result of ventilatory anaerobic threshold problems.

    Heart rate-based pacing is helpful for PEM triggered by physical activity, not for PEM triggered by cognitive, sensory, or emotional exertion. The only thing that works for my neuro PEM is timers and carefully calibrating the types of activities I do.

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

    Long COVID Web:

    Please join us at our upcoming webinar on "Updates from Research in the USA". Hear from Drs. Joseph Breen and Ziyad Al-Aly.

    When: Tuesday, July 16, 2024, 1pm – 2pm ET

    To learn more & register: https://bit.ly/3VZ0mZY

    Hashtags:
    @longcovid

    @covid19

    @auscovid19

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    Long Covid talk titles:

    1. Update on the NIH RECOVER Program with Joseph Breen, NIAID

    2. Update on Long COVID with Ziyad Al-Aly, MD, Chief of Research and Development at VA St. Louis Health Care System

    @longcovid @covid19 @auscovid19

    jonas175 ,
    @jonas175@mastodon.nu avatar

    @tomkindlon @longcovid @covid19 @auscovid19 I have shared the invitation to the post Covid seminar, in the Swedish Facebook group for long Covid, as well in my normal Facebook flow.

    IrishMECFSAssociation , to longcovid group
    @IrishMECFSAssociation@mastodon.ie avatar

    Delighted to announce these free events this October in / / airport/ / / with US expert Dr David Tuller @david

    https://irishmecfs.org/blog/oct-2024-dr-david-tullers-6-free-irish-talks-in-braycorkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

    Also a way to make new contacts or rekindle old acquaintances

    Please share widely 🙏

    @mecfs
    Hashtags:
    @longcovid

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  • tomkindlon ,
    @tomkindlon@disabled.social avatar

    This is a project I have been working on for a while.

    Grateful to David Tuller and the local hosts: Vera Kindlon (Assoc trustee), Audrey Lodge, Ashling O’Leary & Michelle Dinn, Sarah Warde, Orla Ní Chomhraí (Assoc trustee) & Ruth Flood @roothflud . 👍


    @IrishMECFSAssociation @david @mecfs @longcovid

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

    New US research:
    Case-control study on post-COVID-19 conditions [on] potential risk factors

    Free
    https://www.sciencedirect.com/science/article/pii/S2589004224016316

    "Our findings suggest severity of acute infection & history of CPD, , (), or as risk factors for "

    @longcovid

    @covid19

    @mecfs
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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    New US research:

    Case-control study on post-COVID-19 conditions reveals severe acute infection and chronic pulmonary disease as potential risk factors

    Free:

    https://www.sciencedirect.com/science/article/pii/S2589004224016316

    Hashtags:
    @longcovid

    @covid19 @mecfs

    wildwoila ,
    @wildwoila@aus.social avatar

    @tomkindlon
    Interesting! Great to see a study confirm anecdotal/survey evidence. Though worth noting that the sample size was too small to make any direct call on CFS: only one person had CFS before getting covid.

    @longcovid @covid19 @mecfs

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    US research:

    Reduction of long COVID symptoms after stellate ganglion block: A retrospective chart review study

    Free full text:
    https://www.autonomicneuroscience.com/article/S1566-0702(24)00049-3/fulltext

    The Solve ME/CFS Initiative support this researcher

    @longcovid

    @covid19
    @novid @novid
    @auscovid19

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/
    Post summarises this paper:
    New Publication by Solve Ramsay Grant Researcher Dr. Deborah Duricka Studies Efficacy of Stellate Ganglion Block in Reducing Post-Exertional Malaise and Improving Sleep and Neurological Function

    https://solvecfs.org/new-publication-by-solve-ramsay-grant-researcher-dr-deborah-duricka-studies-efficacy-of-stellate-ganglion-block-in-reducing-post-exertional-malaise-and-improving-sleep-and-neurological-function/

    Hashtags:
    @longcovid

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    "Welcome to the 107th Emerge Australia Research Digest, where we delve into recent research and media releases shaping our understanding of ME/CFS and ..."

    The summaries are also available in audio form at link

    https://www.emerge.org.au/researchdigest/research-digest-issue-107/

    @mecfs
    @longcovid

    @covid19

    @auscovid19

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  • IrishMECFSAssociation ,
    @IrishMECFSAssociation@mastodon.ie avatar

    The first item is on the TCD study published earlier this year

    @tomkindlon @longcovid

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    “The idea of rehabilitation will have to be completely rethought for this illness” – Qualitative results of an online survey on patients’ experiences with inpatient rehabilitation for condition ( )

    https://www.zefq-journal.com/article/S1865-9217(24)00092-8/fulltext

    In German with English abstract

    Hashtags:
    @longcovid

    @covid19

    @auscovid19 @mecfs_de

    1/

    NilaJones ,
    @NilaJones@zeroes.ca avatar

    @tomkindlon @longcovid @covid19 @auscovid19 @mecfs_de

    '(50 %) reported that their state of health deteriorated, mainly because of strength or endurance training'

    'learning strategies to avoid deterioration in their state of health due to overexertion, the so-called pacing, should be the core treatment goal for patients affected by PEM.'

    Yep.

    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar

    US research:

    Epidemiologic Features of Recovery From Infection

    https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2820087

    "22.5% did not recover by 90 days post infection". "Recovery within 3 months was less likely in women and those with preexisting cardiovascular disease"

    =====
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "No significant multivariable-adjusted associations [for non-recovery] were observed for age, educational attainment, smoking history, obesity, diabetes, chronic kidney disease, asthma, chronic obstructive pulmonary disease, or elevated depressive symptoms. Results were similar for reinfections"

    @longcovid

    @covid19
    @novid @novid

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

    A causal link between autoantibodies and neurological symptoms in

    https://www.medrxiv.org/content/10.1101/2024.06.18.24309100v1

    "Passive transfer of IgG from patients to mice led to increased sensitivity & pain, mirroring patient-reported symptoms. Similarly, mice injected with IgG showed loss of balance & coordination, reflecting donor-reported dizziness"

    @longcovid

    @covid19

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar
    tomkindlon , to AusCOVID19 group
    @tomkindlon@disabled.social avatar
    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/
    Table 1: Long COVID patient demographics and clinical information.

    From:
    Salivary biomarkers as pioneering indicators for diagnosis and severity stratification of pediatric long COVID

    Free full text:
    https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2024.1396263/full

    ======
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    @longcovid

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/
    Correlations between the salivary biomarkers & the demographic/clinical variables in children with .

    From:
    Salivary biomarkers as pioneering indicators for diagnosis and severity stratification of pediatric long COVID

    https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2024.1396263/full

    Hashtags:
    @longcovid

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  • tomkindlon , to NoVID
    @tomkindlon@disabled.social avatar

    "We've Hit Peak Denial. Here's Why We Can't Turn Away From Reality"

    https://www.scientificamerican.com/article/weve-hit-peak-denial-heres-why-we-cant-turn-away-from-reality/

    Opinion piece asking why we overlook bad things, "especially in this scientific and technological age, when we’ve never been more capable of understanding and addressing them".


    @longcovid

    @covid19
    @novid @novid

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    They urge to stop enabling the denial with doubling "down on our duty to know, to speak up, and to remember".

    & are mentioned

    ====
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    anne_twain ,
    @anne_twain@theblower.au avatar

    @tomkindlon @longcovid @covid19 @novid @novid There's a paywall on this article.

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