longcovid group

tomkindlon ,
@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

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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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  • halcionandon ,
    @halcionandon@aus.social avatar

    Applying for the #NDIS is soul destroying and they keep adding more paperwork and meetings and bullshit just to wear us down.

    I submitted my application in April. I’d been working on it for a year. They generally tell you yes or no without 6 weeks. Instead I didn’t get a reply, I was told the application process has changed and they needed more goals and more meetings. First I was told it was optional, now I’m told it isn’t. Which one is it??

    I look like this most days and they want more bloody meetings!?

    #MECFS #pwME #LongCovid #Stroke #Dysautonomia #DisabilityPrideMonth #Disability

    @ndis
    @chronicillness
    @mecfs
    @longcovid
    @disabilityjustice
    @disability
    @multipledisabilities
    @neisvoid
    @disabilitypridemonth

    halcionandon OP ,
    @halcionandon@aus.social avatar

    @ndis @chronicillness @mecfs @longcovid @disabilityjustice @disability @multipledisabilities @neisvoid

    Plot twist: My area coordinator (LAC) has been been reprimanded for not processing applications properly.

    Now my application has been deemed a rejection and moved to an internal review.

    What the hell? This is a mess.

    tomkindlon ,
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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.

    IrishMECFSAssociation ,
    @IrishMECFSAssociation@mastodon.ie avatar
    tomkindlon ,
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  • halcionandon ,
    @halcionandon@disabled.social avatar

    Has anyone found DHEA useful in or ? How? Any bad effects?

    If you found it useful, were you deficient in DHEA on testing or did you use it just to try out and see.

    There’s also pregnenolone which has helped some people. Has anyone tried this?

    @mecfs
    @longcovid

    acid ,
    @acid@weirder.earth avatar

    @mecfs @halcionandon @longcovid I haven't. I'm using 3x 600mg Acetylcysteine daily, which gives me Energy. And cold showers in the morning which helps mitigating symptoms.

    halcionandon OP ,
    @halcionandon@disabled.social avatar

    @dom_mecfs @mecfs @longcovid

    Ok I see. Im glad it works for you. She recommends testing to see levels first and prefers pregnenolone in general from the Dr Myhill pages I read. I guess it depends on what you have going on.

    There is also the small problem of DHEA being illegal in Australia & only available as a compounded prescription. The laws changed recently and I didn’t know. Not sure about pregnenolone.

    halcionandon ,
    @halcionandon@aus.social avatar

    Applying for the is soul destroying and they keep adding more paperwork and meetings and bullshit just to wear us down.

    I submitted my application in April. I’d been working on it for a year. They generally tell you yes or no without 6 weeks. Instead I didn’t get a reply, I was told the application process has changed and they needed more goals and more meetings. First I was told it was optional, now I’m told it isn’t. Which one is it??

    I look like this most days and they want more bloody meetings!?

    @ndis
    @chronicillness
    @mecfs
    @longcovid

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    Interventional Removal of Travelling Microthrombi Using Targeted Magnetic Microbubble

    https://onlinelibrary.wiley.com/doi/10.1002/adhm.202401631

    "In this work, an interventional method is developed to identify & remove the traveling microthrombi using targeted-magnetic microbubbles (TMMBs) & an interventional magnetic catheter”

    @longcovid


    @covid19
    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "in the rat models, the concentration of microthrombus is reduced by more than 60% in 3 minutes"

    Hashtags:
    @longcovid


    @covid19 @novid @novid @auscovid19

    NilaJones ,
    @NilaJones@zeroes.ca avatar

    @tomkindlon @longcovid @covid19

    Wowowow!!!!

    I would love someone to take a magnet to my level 4 microclots!!!

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    New pre-print:
    Circulating microclots are structurally associated with Neutrophil Extracellular Traps and their amounts are strongly elevated in long COVID patients

    https://www.researchsquare.com/article/rs-4666650/v1

    ====
    Hashtags:
    @longcovid

    @covid19 @novid @novid @auscovid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "Our study revealed that NETs may be a component of circulating FAM, suggesting that higher NETs formation promotes the stabilization of FAM in the circulation, leading to deleterious effects which (in part) may contribute to the symptoms of LC."

    Hashtags:
    @longcovid


    SarahSanger ,
    @SarahSanger@fosstodon.org avatar

    @tomkindlon @longcovid I've heard Airborne AIDS but Airborne Alzheimer's is new... It makes sense when you consider all the brain damage Covid causes.

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    From US:

    Prevalence & Risk Factors of [ ] in Adults with Systemic Autoimmune Rheumatic Diseases

    Free:
    https://t.ly/TUh8v

    " was reported by…29.8%. Most common symptoms included fatigue (70.8%), loss of concentration/brain fog (68.5%) & joint pain/swelling (38.2%)”

    Hashtags:
    @longcovid

    @covid19 @novid @novid

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    Hypothesis paper from Spanish researchers:

    Hypocortisolemic ASIA: a vaccine- and chronic infection-induced syndrome behind the origin of long COVID and myalgic encephalomyelitis

    Full paper now available:
    https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1422940/full

    @longcovid
    @mecfs

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    New:

    An HERV-W ENV transcription in atypical memory B cells linked to evolution & risk for can express the encoded protein from a ribosome readthrough of mRNA from chromosome X

    https://www.medrxiv.org/content/10.1101/2024.07.03.24309822v1

    Hashtags:

    @longcovid


    @covid19 @novid @novid @auscovid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "Results not only confirm HERV-W ENV RNA origin in these patients, but show for the first time how a defective HERV copy can be translated into a complete protein when specific factors make it possible at the ribosome level.”

    Hashtags:

    @longcovid


    @covid19

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    The Unanticipated Use of Fitness Tracking Technologies During

    https://doi.org/10.1145/3643834.3661617

    "We found people with are using commercial fitness tracking technologies in unanticipated ways to collect data such as heart rate, number of steps and sleep quality”

    @longcovid


    @covid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    “(Contd) These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."

    Hashtags:
    @longcovid

    Frieke72 ,
    @Frieke72@mastodon.social avatar

    @tomkindlon yep, recently bought a Garmin vivoactive which gives me insight in state of body and with alarm to keep HR low.
    @longcovid @covid19

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    New Spanish research:

    Reduced autonomic function in patients with -19 syndrome is mediated by cardiorespiratory fitness

    https://www.sciencedirect.com/science/article/pii/S0146280624003694

    Comment: this found a correlation. It doesn’t mean the problem can necessarily be reversed by exercising more

    Hashtags:
    @longcovid

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "our study establishes that patients with LCS [ Syndrome] exhibit lower absolute and relative HRV values compared to controls, with peak VO2max emerging as a significant mediator in this relationship."


    @longcovid

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    Here's the latest News in Brief from the Science for ME forum, for week starting July 1:

    https://www.s4me.info/threads/news-in-brief-july-2024.39237/#post-541568/

    This summary includes media coverage, research news, patient advocacy, coming events, and more.

    @mecfs @longcovid

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