longcovid group

tomkindlon ,
@tomkindlon@disabled.social avatar

Video of Researchers Talking About T-Cell Dysfunction in &

From MassME newsletter:
https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1385&reset=1

Links in image:
https://www.remissionbiome.org/events/calendar
https://www.umassmed.edu/news/news-archives/2024/02/umass-chan-advances-research-into-long-covid-myalgic-encephalomyelitis/
https://hifibio.com/
https://patientresearchcovid19.com/
https://www.youtube.com/watch?v=e2FzJ6Md7hE&t=3214s

@mecfs
@longcovid

Hear Massachusetts Researchers Talk About T-Cell Dysfunction in ME/CFS and Long COVID Hosted by Research Renegade/Remission Biome, this roundtable took place on May 24, 2024. Speakers: Liisa K. Selin, MD, PhD, and Anna Gil, PhD, viral immunologists from the Univ. of Massachusetts Chan Medical School, and Roshan Kumar, PhD, HiFiBiO Therapeutics, a clinical stage global biotech company in Cambridge, MA. These two Massachusetts research teams are working together on a project awarded by the Patient-Led Research Collaborative (PLRC). Also joining are PLRC Patient Representatives Megan L. Fitzgerald, PhD, and Rivka Solomon, MS. Watch the video here.
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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    Register for the Autoimmune Registry

    From the Massachusetts ME/CFS & FM Association newsletter:
    https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1385&reset=1

    Link in image:
    https://www.autoimmuneregistry.org/register

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    @mecfs
    @longcovid
    @fibromyalgia @chronicillness
    @spoonies

    Register for the Autoimmune Registry The Autoimmune Registry Inc. (ARI) collects patient-reported data on all autoimmune diseases, including suspected autoimmune conditions like Long COVID, fibromyalgia, and ME/CFS. It aggregates information on these diseases and their comorbidities to help researchers identify trends and gain a deeper understanding of this complex class of conditions. For details and to join the registry, click here.
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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    (US)
    Join a Wearable Research Study

    From the Massachusetts ME/CFS & FM Association newsletter:
    https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1385&reset=1

    Links in image:
    https://longcovid.scripps.edu/?ref=studyme
    https://mydatahelps.org/e/BSLHLF/Enroll_1?ref=studyme

    @longcovid
    @pots
    @mecfs

    Join a Wearable Research Study Julia Vogel at Scripps is leading a research study to determine if using using wearables for activity management can help manage the symptoms of Long COVID, ME/CFS, and/or POTS. Learn more here or check to see if you qualify for the study here. If you do not already own a wearable device, the study will provide one.
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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    Contribute to Research on Long COVID Treatments

    From the Massachusetts ME/CFS & FM Association newsletter:
    https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1385&reset=1

    Links in image:
    https://cure.ncats.io/home
    https://cure.ncats.io/assets/faq-long-covid.pdf

    =======
    Hashtags:
    @longcovid

    @covid19

    Contribute to Research on Long COVID Treatments Join the NIH, FDA, and partners (including #MEAction and Patient-Led Research Collaborative) in advancing our understanding of the treatments of Long COVID. What treatments are you taking and how have they impacted you? Take the CURE ID Treatments for Long COVID Survey now by visiting CURE-ID or download the “CURE ID” mobile app now! CURE ID is an online treatment repository to collect information about what treatments have worked or not worked for difficult to treat diseases. The data will help guide future clinical trials. Learn more here.
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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    Long COVID Job Accommodations in the Harvard Business Review

    From the Massachusetts ME/CFS & FM Association newsletter:
    https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1385&reset=1

    Link in image:
    https://hbr.org/2024/05/long-covid-at-work-a-managers-guide

    @chronicillness
    @spoonies
    @disability
    @longcovid @mecfs

    Long COVID Job Accommodations in the Harvard Business Review The Harvard Business Review's annual Big Idea feature focuses on a topic of current pressing concern for businesses. The 2024 Big Idea is 'Working with Chronic Illness' and the lead article outlines how businesses can recognize and make accommodations for employees with Long COVID and other chronic illnesses like ME/CFS. The authors of the article are Katie Bach (Brookings Institution and PolyBio Research), Ludmila Praslova (author of The Canary Code), and Beth Pollack (MIT).
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    • ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    New video on PEM (post-exertional malaise) from the Bateman Horne Center, second video in "the Basics" series. About 3 1/2 minutes long.

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

    Roughly half of Long Covid patients meet the ME/CFS criteria which means they will also have PEM.

    @mecfs @longcovid

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    Here's the latest News in Brief from the Science for ME forum, for week starting June 24:

    https://www.s4me.info/threads/news-in-brief-june-2024.38870/#post-540605

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

    @mecfs @longcovid

    tomkindlon ,
    @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

    Frieke72 , Dutch
    @Frieke72@mastodon.social avatar

    Daar is het nieuws; de eerste polikliniek gaan over enkele weken open. UMC Rotterdam Maastricht en Amsterdam.
    Later de andere UMC's.
    Vraag patiëntenspreiding te beantwoorden.
    Brabant heeft geen umc bij mijn weten.. Benieuwd 😏
    Link naar volledige bericht Minister MZ Dijkstra op Instagram
    https://www.instagram.com/reel/C84a5exJhav/?igsh=MThyMnN3Y2c4aXI3MQ==
    @longcovid @LongcovidNieuws

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    Putrino Lab @PutrinoLab
    June 28

    Hi team! We are still recruiting for our cortisol study! We only have 12 spots left for those with and around 50 for those who fully recovered quickly from or who have never had a COVID infection. Email CoreResearch@mountsinai.org if you can help us 🙏🏻🙏🏻

    Hashtags:
    @longcovid

    @covid19

    Are you interested in participating in Long COVID research? Mount Sinai We are recruiting individuals for a research study involving collecting saliva samples at home over two days You are eligible to participate if you: • Have Long COVID; or, Had COVID-19 infection and recovered quickly; or, • Have never had COVID-19 infection; and, Are aged 18 and above Study site: Mount Sinai Hospital - 5 E 98th Street, New York For more information, please contact: Mackenzie. Doerstling@mountsinai.org Mount Sinai IRB STUDY-22-00524
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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    “The long arm of long COVID in Utah”

    https://kslnewsradio.com/2112788/long-covid-effects/

    Article links to the new definition for Long Covid from National Academies of Science, Engineering & Medicine. It also discusses the prevalence of & possible risk factors for . & also mentioned.

    @longcovid

    @mecfs @pots

    tomkindlon ,
    @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 ,
    @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
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    • tomkindlon ,
    @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 ,
    @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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