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

From China:

Faecal microbiota transplantation for sleep disturbance in post-acute COVID-19 syndrome

https://www.cghjournal.org/article/S1542-3565(24)00542-1/abstract

"At week 12, more patients in the FMT than the control group had insomnia remission (37.9% vs 10.0%; p=0.018). (contd)”

Hashtags:

@longcovid
@covid19

1/

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

From Canada:

Differential Gene Expression in the Upper Respiratory Tract following Acute COVID-19 Infection in Ambulatory Patients That Develop Long COVID

https://www.mdpi.com/2076-0817/13/6/510

====•
Hashtags:

@longcovid


@covid19 @novid @novid @auscovid19

1/

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

US research:

Habitual physical activity and

https://t.ly/kLkaJ

"Factors predictive of poor PA [physical activity] recovery were higher pre-diagnosis PA, shortness of breath and fatigue during acute illness, and fatigue chronically”

Hashtags:
@longcovid


@covid19 @novid @novid @auscovid19

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

New from Spain:

An immersive virtual reality-based object-location memory task reveals spatial long-term memory alterations in

https://www.sciencedirect.com/science/article/pii/S0166432824002833

====
Hashtags:
@longcovid

@covid19
@novid @novid
@auscovid19

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

2/

"The Long-COVID group showed fewer correct responses, made more task attempts, and invested more time in the iVR-based OLM task than the Control group. Delayed memory was more severely altered than immediate memory in Long-COVID participants."

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

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

Short- & long-term neuropsychiatric outcomes in in South Korea & Japan

https://www.nature.com/articles/s41562-024-01895-8

“A range of conditions including Guillain-Barré syndrome/cognitive deficit/insomnia/anxiety disorder/encephalitis/ischaemic stroke/mood disorder exhibited a pronounced increase in long-term risk”

@longcovid


@covid19 @novid

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

🧵

In 2022 Carl Jreidini wrote about taking the lead himself in his long Covid care and asked for "more collaborative, open-minded relationship with healthcare professionals".

Free:
https://www.bmj.com/content/376/bmj.n3102

@longcovid

1/

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

🧵

“Trial by Error by David Tuller: The Conversation Recycles Biopsychosocial Nonsense”

https://virology.ws/2024/06/28/trial-by-error-the-conversation-recycles-biopsychosocial-nonsense/

@longcovid
@mecfs

1/

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

Medscape: How to Fix $1.6 Billion Long Program: Experts Weigh In

https://www.medscape.com/viewarticle/how-fix-1-6-billion-long-covid-program-experts-weigh-2024a1000bs4
(may require free registration)

Suggestions from researchers & patients for improving the NIH RECOVER initiative for research

@longcovid
@covid19 @auscovid19

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

🧵
New pre-print:

Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry

https://www.researchsquare.com/article/rs-4507472/v1

=========
@longcovid

@mecfs
@covid19

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

3/
New pre-print:

Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry

https://www.researchsquare.com/article/rs-4507472/v1

Hashtags:
@longcovid

@mecfs
@covid19

tomkindlon OP ,
@tomkindlon@disabled.social avatar

4/

"We demonstrate significant microclot prevalence in ME/CFS and LC, with patients exhibiting the highest concentration (18- and 3-fold greater than the healthy and ME/CFS groups, respectively). This finding underscores a common pathology across both conditions, emphasizing a dysregulated coagulation system."

@longcovid @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

1/

Highlights • SARS-CoV-2 infection can cause a long-standing complex constellation of symptoms (Long COVID) • Stellate Ganglion Block can improve symptoms of Long COVID • The mechanism by which SGB improves Long COVID symptoms remains unknown • SGB may correct neuroimmune and/or brain-body axis dysfunction in Long COVID Abstract The SARS-CoV-2 pandemic has left millions of individuals with a host of post-viral symptoms that can be debilitating and persist indefinitely. To date there are no definitive tests or treatments for the collection of symptoms known as “Long COVID” or Post-acute sequelae of COVID-19 (PASC). Following our initial case report detailing improvement of Long COVID symptoms after sequential bilateral stellate ganglion blockade (SGB), we performed a retrospective chart analysis study on individuals treated with the same protocol over the course of six months (2021−2022) in our clinic. Patients self-reported symptoms on a 10-point scale as part of optional patient follow-up using an online survey. After one month or more following treatment, patients reported striking reductions in Fatigue, Worsening of Symptoms following Mental and Physical Activity, Memory Problems, Problems Concentrating, Sleep Problems, Anxiety, and Depression. Loss of Taste and Loss of Smell in some individuals did not respond to treatment, likely indicating structural damage following infection.
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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

    10:33 am June 27, 2024 Research Digest | Issue 107 Welcome to the 107th edition of Emerge Australia’s Research Digest, where we delve into recent research and media releases shaping our understanding of ME/CFS and Long COVID. In this issue, we focus on pivotal studies and insightful reports that shed light on the blood-brain disruption in those with Long COVID, and MRI studies that show similar neurochemical profiles in ME/CFS and Long COVID. Furthermore, we highlight the Federal government’s announcement of $1.1m to enable the National Health and Medical Research Council to develop much-needed ME/CFS clinical guidelines in Australia.
    ALT
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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 longcovid group
    @tomkindlon@disabled.social avatar

    US research:

    The hidden crisis: 's association with housing stability and home accessibility among people with disabilities

    Free full text:
    https://www.sciencedirect.com/science/article/pii/S1936657424000815

    "Associations between Long and challenges related to housing stability and home accessibility highlight the need for systemic changes, financial support, and advocacy."

    @longcovid

    @disability
    @disabilityjustice

    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/

    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

    Patient-Led Research Collaborative

    A new issue of our Patient-Generated Hypotheses Journal is out! It includes hypotheses on mechanisms & treatments for , ME/CFS, & POTS from patients & caregivers with diverse backgrounds, ranging from PhDs to self-taught patient experts

    https://patientresearchcovid19.com/patient-generated-hypotheses-journal-issue-2-summer-2024/

    @longcovid

    @mecfs

    Patient-Led Research Collaborative logo Patient-Generated Hypotheses Journal Issue 2 Table of Contents About the Patient-Generated Hypotheses Journal Patient-Led Research Collaborative Elevated abundance of the Streptococcaceae family within the intestinal microbiome is a consistent and relevant finding for ME/CFS Vijay Iyer Chronic inflammation in Long COVID reduces dopamine levels, and contributes to fatigue and brain fog Liz Moore Carbonic anhydrase activity is increased in myalgic encephalomyelitis/chronic fatigue syndrome Rhyothemis Princeps BCG vaccination as a treatment option for ME/CFS and Long COVID Herbert Renz-Polster
    ALT
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    • 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

    3/
    Summary for laypeople from the Solve ME/CFS Initiative:

    "New Study By Dr. Akiko Iwasaki Finds That Autoantibodies Can Drive Severe Neurological Symptoms In People with Long Covid"

    https://solvecfs.org/new-study-by-dr-akiko-iwasaki-finds-that-autoantibodies-can-drive-severe-neurological-symptoms-in-people-with-long-covid/

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

    @covid19
    @novid @novid
    @auscovid19

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

    🧵
    From Spain:

    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

    ======
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    1/

    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

    ======
    Hashtags:
    @longcovid

    Table 1 Long COVID patient demographics and clinical information. Characteristics Number of patients Values 49 Average diagnosis age (range) 13.3 (9-18) Female sex (%) Mild long COVID (%) Severe long COVID (%) 34 (69.4) 35 (71.4) 14 (28.6) Relatives with long COVID (%) 15 (30.6) Previous psychiatric disorder (%) 5 (10.2) Atopy (%) 7 (14.3) Asthma (%) 4 (8.2) Fatigue test with 'high' or 'very high' result (%) 22 (44.9) CNS symptoms (%) 39 (79.6) Brain fog (%) 29 (59.2) Weight loss (%) 11 (22.4) Respiratory symptoms (%) 29 (59.2) Cardiovascular symptoms (%) 32 (65.3) Insomnia (%) 23 (46.9) Altered school attendance (%) 14 (28.6) Reduced school performance (%) Interruption of extracurricular activities (%) 22 (44.9) 24 (49.0) Interruption of sports activity (%) 26 (53.1) Note that, except for the number of patients and the average diagnosis age, in all the following rows the numbers outside the parentheses indicate the total number of individuals for each variable, while the numbers in parentheses indicate the percentages they represent with respect to the total number of children with long COVID enrolled in this study.
    ALT
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    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Screenshot from new 4-minute video "The Basics: Post-Exertional Malaise (PEM)"

    https://www.youtube.com/watch?v=UkS6L3Klc00

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

    @mecfs

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

    Bateman Horne Center

    "Post-exertional malaise (PEM) isn’t due to laziness or deconditioning." - Clayton Powers, DPT Do your symptoms worsen when you push yourself beyond your energy threshold? Powers explains what PEM is in this short video: https://youtu.be/UkS6L3Klc00

    New 3-minute video

    Hashtags:
    @longcovid

    @mecfs

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