longcovid group

tomkindlon ,
@tomkindlon@disabled.social avatar
Rhyothemis ,
@Rhyothemis@zeroes.ca avatar

@tomkindlon @pots @mecfs @longcovid

another symptom - coat hanger pain

I used to get it after standing for > 30 min.

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

2/
Microclot concentrations determined by the present cell-free flow clotometry technique for the three cohorts

from

Flow Clotometry: Measuring Amyloid Microclots in , , & Healthy Samples with Imaging Flow Cytometry

https://www.researchsquare.com/article/rs-4507472/v1
@longcovid @mecfs @covid19

tomkindlon OP ,
@tomkindlon@disabled.social avatar
tomkindlon ,
@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 ,
@tomkindlon@disabled.social avatar
BruceMirken ,
@BruceMirken@mas.to avatar

@tomkindlon @longcovid @covid19 @novid @novid @auscovid19 And the CDC isn't even tracking cases anymore.

MxVerda ,
@MxVerda@lgbtqia.space avatar

@tomkindlon @longcovid @covid19 @novid @novid @auscovid19 I hate how this is still somehow surprising to anyone, especially the people who “are bored of covid” now

tomkindlon ,
@tomkindlon@disabled.social avatar

US research:

Sex differences and immune correlates of Long COVID development, persistence, and resolution

https://www.biorxiv.org/content/10.1101/2024.06.18.599612v1

"males […] had widespread increases in TGF-β signaling during acute infection in proliferating NK cells. (contd)”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver #auscovid19 @auscovid19

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

“(Contd) Females […] demonstrated increased expression of XIST, an RNA gene implicated in autoimmunity, and increased IL1 signaling in monocytes"

"this study describes multiple innate and adaptive immune correlates of LC, some of which differ by sex"

@longcovid #LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #auscovid19 @auscovid19

flavia_feijo_epi ,
@flavia_feijo_epi@med-mastodon.com avatar
tomkindlon ,
@tomkindlon@disabled.social avatar
tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

"data strongly suggest an important role of NK cells in orchestrating the pathophysiology of different phases of COVID-19 and of some post-vaccination side effects."

Hashtags:
@longcovid

@covid19
@novid @novid
@auscovid19

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

    "Mounting evidence suggests that immunoglobulin transfer from patient donors often induces the respective SBD phenotype in rodents.

    Understanding antibody binding epitopes and downstream mechanisms will require substantial research efforts, but treatments to reduce antibody titres can already now be evaluated."

    @fibromyalgia @pots @mecfs @longcovid

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    🧵
    It's 5th anniversary of our paper

    "Monitoring treatment harm in / : A freedom-of-information study of NHS specialist centres in England"
    https://journals.sagepub.com/doi/10.1177/1359105319854532

    Hopefully it will influence, among other things, clinics

    @mecfs

    @longcovid
    @b_m_hughes

    1/n

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  • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/

    I searched but couldn't find a legal copy online of "Monitoring treatment harm in / ..." that others can access so I uploaded here https://www.researchgate.net/publication/334005289_Monitoring_treatment_harm_in_myalgic_encephalomyelitischronic_fatigue_syndrome_A_freedom-of-information_study_of_National_Health_Service_specialist_centres_in_England
    what we submitted to the journal which is something we own the copyright on.

    @mecfs @longcovid @b_m_hughes

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    4/

    A webpage with a thread of tweets on the paper "Monitoring treatment harm in / : A freedom-of-information study of NHS specialist centres in England" from @mecfsskeptic

    https://threadreaderapp.com/thread/1144264687917424642.html

    @mecfs @longcovid @b_m_hughes

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    From STAT:

    "Readers respond to essays on long Covid …"

    https://www.statnews.com/2024/06/22/letters-to-the-editor-long-covid-hypochondria/

    NIH has "failed to publish any research that furthers our understanding of the underlying cause of long Covid and the vast majority of clinical trials they’ve launched are for drugs that people have already tried and found unhelpful."

    "NIH should reevaluate how it allocates funding to diseases and base allocations on objective patient burdens."

    @mecfs @longcovid

    dom_mecfs ,
    @dom_mecfs@mas.to avatar

    @ahimsa_pdx @mecfs @longcovid what they should do is investigate pathology properly and subtype patients. So as to figure out why 10% of patients responded to a particular drug in a particular trial. Instead of wasting millions.

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    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 ,
    @tomkindlon@disabled.social avatar

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

    2/

    "Utilizing our novel metabolic modeling method, GPMM [Genome-wide knockout analyses], we identified the key metabolic irregularities in patients with ME/CFS and Long COVID, notably the downregulation of the alanine and aspartate metabolism pathway, and the arginine and proline metabolism pathway."

    @longcovid @covid19 @mecfs #mecfs #longcovid

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    New German #LongCovid study

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

    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
    #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers #PASC #COVIDBrain
    @covid19 #Coronavirus
    #COVID19 #COVID #SARSCoV2 #novid

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    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
    #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
    @covid19 #Coronavirus
    #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid @novid #CovidIsNotOver
    @auscovid19 #auscovid19

    Frieke72 ,
    @Frieke72@mastodon.social avatar
    failedLyndonLaRouchite ,

    @Frieke72 @longcovid

    I am not enough of an expert to be sure, but this sounds to me like alarmist nonsense, a classic example of how on social media, we hear the most extreme hot takes

    Frieke72 OP ,
    @Frieke72@mastodon.social avatar

    @failedLyndonLaRouchite I follow the science more closely since mid 23 and this is really no nonsense
    @longcovid

    EricCarroll ,
    @EricCarroll@zeroes.ca avatar

    Interesting animal investigation of the hypothesis.

    What causes long COVID? Case builds for rogue antibodies

    > Study finds that antibodies from people with the debilitating condition trigger similar symptoms in mice.

    https://www.nature.com/articles/d41586-024-02010-7


    @longcovid

    subjacentish ,
    @subjacentish@zeroes.ca avatar

    @EricCarroll @longcovid Related to that afucosylatic Megakaryocyte stuff from earlier, no doubt. The replicated that in mice as well, as I recall.

    halcionandon ,
    @halcionandon@disabled.social avatar
    samohTmaS ,

    @halcionandon @longcovid

    Lynn Parramore's commends are spot on. Excellent !!

    The referenced National Academy paper, as with most of their papers is hamstrung by the narrow charge they were given. ALL Academy papers suffer severely from this.

    They were narrowly charged with long COVID. That is needed, but way overly narrow. They are disallowed from exceeding their charge even a little.

    Further, it is very much based on economics and production, not on people's health!

    halcionandon OP ,
    @halcionandon@disabled.social avatar

    @julesbl @longcovid

    I posted this thinking nobody would read it, but it’s doing the rounds online so let’s hope it spills into real life.
    (I would have added an intro if I knew but everyone’s posting it with their own.)
    It’s like the powers that be were giving us crumbs and now they’ve decided it’s time for the truth to start coming out.
    We don’t have leaders or doctors that even know how to deal with these problems. I don’t have any answers with the world as it is other than “wear masks“

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