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tomkindlon

@tomkindlon@disabled.social

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 35 years, severely affected 29 years. Health has deteriorated post Covid (March 2022).

Irish ME/CFS Association* trustee 26 years. 26 publications in peer-reviewed journals.

MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie

This profile is from a federated server and may be incomplete. For a complete list of posts, browse on the original instance.

tomkindlon , to AusCOVID19 group
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tomkindlon OP ,
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2/
"We found that PCC* participants with poorer sleep quality had worse cognitive performance in some domains (verbal and visual memory and processing speed), with a moderating effect on quality of life, cognitive reserve, and everyday memory failure."

*post-COVID-19 condition

@longcovid @covid19 @novid @novid @auscovid19

tomkindlon , to longcovid group
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Vocational rehabilitation for Long Covid: a roadmap for recovery

https://t.co/oqCQPoxwt7

"Long Covid and similar energy-limiting illnesses cause a range of health problems which result in long-term sickness absence and long-term unemployment in an era of workforce shortage."

Hashtags:
@longcovid

@spoonies
1/

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  • tomkindlon OP ,
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    2/

    "(Contd) The variability of the condition and of employer attitudes, severity of impact on daily life and work, and the fluctuating nature of the condition pose the question of how to manage a sustained return to work."

    @longcovid @spoonies

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

    Meta-analysis of Cognitive Function Following Non-severe SARSCoV2 Infection

    Paywall:
    https://link.springer.com/article/10.1007/s11065-024-09642-6

    "The aim of this meta-analysis is to describe objective cognitive impairment in individuals with non-severe (mild or moderate) cases in the post-acute stage of infection”

    Hashtags:
    @longcovid

    @covid19

    tomkindlon , to AusCOVID19 group
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    tomkindlon OP ,
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    2/

    "Significantly increased Cho concentrations & decreased NAA/Cho were found in the CCS in the older subjects"

    "may be related to the microstructural reorganization in the corpus callosum (also reported in diffusion measurements) rather than increased membrane turnover"

    ==============
    Hashtags:
    @longcovid

    @covid19

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

    Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer).

    My thoughts are with those with conditions such as ME for which this is relevant.

    Hashtags:
    @longcovid
    @chronicillness
    @spoonies
    @disability
    @mecfs

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  • tomkindlon , to ChronicIllness group
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  • tomkindlon OP ,
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    2/

    They gave blood and saliva samples at home or at a nearby lab.

    “The Pax LC trial is a historic contribution to the evolution of a new way of doing trials”

    "Traveling to each participant’s home would seem to be a pricey endeavor. But given its greater efficiency, the design of the PAX LC Trial has actually cut down on costs", Krumholz argues.

    Comment: The same issues arise with ME/CFS. I see Jarred Younger is doing one or more trials remotely

    @longcovid @mecfs @chronicillness @spoonies

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  • tomkindlon , to AusCOVID19 group
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    New French study

    Persistent brain metabolic impairment in long COVID patients with persistent clinical symptoms: a nine-month follow-up [18F]FDG-PET study

    Abstract:
    https://link.springer.com/article/10.1007/s00259-024-06775-x

    ====================
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    1/

    tomkindlon OP ,
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    2/
    "SARS-CoV-2 provokes persistent long-term brain metabolic changes on brain FDG PET in the selected population of patients with prolonged long COVID symptoms, without progressive worsening of the hypometabolisms."

    ================
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    tomkindlon , to longcovid group
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    New German study

    Altered brain perfusion and oxygen levels relate to sleepiness and attention in

    Free full text:
    https://onlinelibrary.wiley.com/doi/10.1002/acn3.52121

    "our study shows widespread reductions in cerebral blood oxygen levels in PCS that are related to symptoms of daytime dysfunction and cognitive impairment (contd)"

    Hashtags:
    @longcovid

    @covid19

    1/

    tomkindlon OP ,
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    2/

    "(Contd) Changes in oxygen metabolism and blood perfusion may serve as an adaptive mechanism to mediate brain vascular damage and/or as a mode of maintaining normal daily functioning."

    ========================
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    tomkindlon , to ChronicIllness group
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  • tomkindlon , to AusCOVID19 group
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    Press release:
    “Risk factors for revealed”
    https://www.eurekalert.org/news-releases/1048330

    “Although studies have suggested many patients with long experience mental health challenges, we did not find that depressive symptoms prior to infection were a major risk factor for long COVID”

    @longcovid


    @covid19 @auscovid19

    tomkindlon , to ChronicIllness group
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    Oonagh Cousins & the dangers of the Lightning Process

    Latest Post-Exertional Mayonnaise interview:

    https://youtu.be/sUi9Wx9jp3Q?si=eeKxpjGr2X1G-Wjp

    From Science for ME update: “An insightful conversation with Oonagh Cousins, former professional rower with team GB ‘about her personal experience of , processing guilt and grief, and her brief engagement with the Lightning Process..’

    @longcovid
    @mecfs
    @chronicillness
    @spoonies

    video/mp4

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

    ABC News (Australia): Too many children with are suffering in silence

    https://t.ly/SrKjj

    "One of the things that shocks Dr Scoullar most, though, is how many of her patients have struggled with other doctors,especially paediatricians”

    Hashtags:
    @longcovid @covid19 @novid @auscovid19

    tomkindlon , to longcovid group
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    Childhood, interrupted: 12-year-old Toby's life with

    https://www.theguardian.com/society/article/2024/jun/12/childhood-interrupted-12-year-old-tobys-life-with-long-covid

    111,816 children in England & Scotland are estimated to have Long Covid. Toby & his family describe the harsh reality & impact of this disease. Dr Binita Kane says the NHS is not keeping up with the massive challenge Long represents. The article also mentions reinfection as an elephant in the room.

    @longcovid

    @covid19
    @novid

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

    From: Long Covid Advocacy 💙
    @LongCovidAdvoc on the bird site :

    🏳️‍🌈It's & thank you to Taipai Queen for talking about the intersection with

    "It's never too late to start wearing your mask again"

    😷Protect Others Protect Yourself 😷

    @longcovid

    @covid19
    @novid
    @auscovid19

    video/mp4

    tomkindlon , to NoVID
    @tomkindlon@disabled.social avatar

    From David Tuller DrPH

    “In a recent piece Betsy Ladyzhets [from The Sick Times] reports about problems with RECOVER based on documents obtained through the Freedom of Information Act. We talked the other day about her findings.”

    https://virology.ws/2024/06/13/trial-by-error-betsy-ladyzhets-on-problems-with-nihs-recover-initiative/

    @longcovid


    @novid

    1/

    tomkindlon OP ,
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    2/

    "Ladyzhets recently wrote a new article about RECOVER, published in The Sick Times
    as well as STAT, based on documents she received from NIH through the Freedom of Information Act. We spoke the other day about what she found out".


    @longcovid

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

    Interesting German #Covid paper:

    Persistent symptoms & clinical findings in adults with post-acute sequelae of #COVID19 / #postCOVID19 syndrome in the second year after acute infection: population-based, nested case-control study

    https://www.medrxiv.org/content/10.1101/2024.05.22.24307659v1

    @longcovid
    #LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
    #CovidBrain
    @covid19 #COVIDー19 #COVID_19 #SARSCoV2 @novid #novid #auscovid19 @auscovid19

    1/

    tomkindlon OP ,
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    2/
    "This nested population-based case-control study demonstrates the majority of PCS cases do not recover in the second year of their illness, with patterns of reported symptoms remaining essentially similar, nonspecific & dominated by fatigue, exercise intolerance & cognitive complaints”

    Hashtags:
    @longcovid @covid19 @novid

    tomkindlon , to AusCOVID19 group
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    Growth Differentiation Factor-15 Is Considered a Predictive Biomarker of in Non-hospitalized Patients

    https://t.ly/eYkfB

    "Elevated serum GDF-15 levels in acute phase of may act as a predictive biomarker with onset of long "

    Sample sizes very small

    Hashtags:

    @longcovid

    @covid19 @novid @auscovid19

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

    Circulating microaggregates as biomarkers for the

    https://t.ly/0Eseu

    "We report on a patient suffering from fatigue, post exertional malaise, pain & neurological symptoms as a consequence of the second infection. Using live confocal microscopy on native whole blood samples we detected microaggregates of thrombocytes, leukocytes and plasma proteins in peripheral blood”

    @longcovid

    tomkindlon , to AusCOVID19 group
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    Plasma taurine level is linked to symptom burden & clinical outcomes in condition

    https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0304522

    "Increase in taurine levels during the transition to convalescence were associated with a reduction in adverse events independent of comorbidities & acute severity"

    Hospitalised patients.

    @longcovid
    @covid19 @auscovid19

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

    New-ish US [Mayo Clinic] study:

    Pro Inflammatory Cytokines Profiles of Patients With Long Differ Between Variant Epochs

    Free:
    https://journals.sagepub.com/doi/10.1177/21501319241254751

    "When stratified by variant epoch, patients with early epoch Long COVID had persistently elevated peripheral pro-inflammatory cytokine levels when compared to later epoch . (contd)"

    @longcovid

    @covid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "(Contd) Patients with Long COVID have similar clusters of symptoms across epochs, suggesting that the underlying pathology is independent of the peripheral cytokine signature."

    Hashtags:
    @longcovid

    @covid19
    @novid
    @auscovid19

    tomkindlon , to AusCOVID19 group
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  • tomkindlon OP ,
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    2/

    Press release:

    The Australian Government is investing nearly $14.5 million into research to improve our understanding of the impacts of on individuals, the community & the Australian health system.

    https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/15-million-in-research-for-long-covid

    Hashtags:
    @longcovid

    @covid19
    @novid
    @auscovid19

    tomkindlon , to NoVID
    @tomkindlon@disabled.social avatar

    •First network meta-analysis of oral antiviral drugs effects on condition ( )

    •Early use of oral antiviral drugs in acute phase of has a protective effect against PCC

    •Nirmatrelvir-ritonavir may be a superior choice over molnupiravir on reducing risk of PCC

    Hashtags:
    @longcovid

    @covid19
    @novid

    1/

    tomkindlon OP ,
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    2/

    "Nine observational studies containing 866,066 patients were included, in which nirmatrelvir-ritonavir and molnupiravir were evaluated in eight and two studies respectively, with both drugs evaluated in one study. Pair-wise meta-analysis showed that early oral antiviral drugs reduced PCC risk (RR 0.77, 95% CI 0.68–0.88)."

    @longcovid

    @novid
    @auscovid19

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    ‪3/‬
    ‪Early use of oral antiviral drugs and the risk of post COVID-19 syndrome: a systematic review and network meta-analysis‬

    https://www.journalofinfection.com/article/S0163-4453(24)00124-5/fulltext‬

    Hashtags:

    @longcovid


    @covid19 @novid @auscovid19

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    @ChiaraChiarel

    Thanks for letting me know.

    There are brackets in the link which I think may confuse the software.
    This should work:
    https://t.ly/J3ivM

    @longcovid @covid19 @novid @auscovid19

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

    From the Netherlands

    Whole blood transcriptome in long patients reveals association with lung function and immune response

    https://www.jacionline.org/article/S0091-6749(24)00566-9/fulltext

    "In this study we clustered the transcriptome of patients into two distinct clusters & showed differences in innate and adaptive immune activation and pulmonary function between those clusters"

    Hashtags:
    @longcovid

    @covid19

    tomkindlon , to NoVID
    @tomkindlon@disabled.social avatar

    A Holistic Analysis of Symptom Profiles among People with -19 in India: A Prospective 1-Year Follow-Up Study

    https://www.sciencedirect.com/science/article/pii/S2213398424001490

    "Out of 350 [hospitalised] participants, 148 respondents (42.3%) recovered after 1 year of illness and 202 (57.7%) were still experiencing symptoms at the time of survey completion."

    Hashtags:
    @longcovid

    @covid19
    @novid

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

    Comparing risk of post infection erectile dysfunction following SARS 2 stratified by acute and long , hospitalization status, and vasopressor administration

    https://www.nature.com/articles/s41443-024-00913-7

    "We found that patients with are at a higher risk of being diagnosed with ED than patients with only acute COVID, while there was no significantly increased risk for patients with more severe infection requiring hospitalization or vasopressors"

    @longcovid

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

    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 ,
    @tomkindlon@disabled.social avatar

    4/
    "Participants described tracking health trajectories using wearables and other assistive devices including apps, [t]rackers and wireless activity and heart rate monitors to identify potential triggers and learn limits to inform strategies of pacing"

    @longcovid

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    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 "

    Hashtags:
    @longcovid

    @covid19

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

    Nirmatrelvir-Ritonavir and Symptoms in Adults With Postacute Sequelae of Infection: The STOP-PASC RCT

    https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2819901

    "The results of this randomized clinical trial showed that a 15-day course of NMV/r in a population of patients with was generally safe but did not demonstrate a significant benefit for improving select PASC symptoms in a mostly vaccinated cohort with protracted symptom duration"

    @longcovid

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

    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

    Hashtags:
    @longcovid

    @covid19

    @auscovid19

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  • tomkindlon , to MECFS group
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    tomkindlon OP ,
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    2/

    "Complex, infection-associated chronic conditions affecting multiple body systems are not new, and Long COVID shares many features with such conditions as [ME/CFS], , and [ ]. Current theories about the pathophysiology of these conditions include immune dysregulation, neurological disturbances, cardiovascular damage, gastrointestinal dysfunction, metabolic issues, and mitochondrial dysfunction."

    @longcovid @mecfs

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