tomkindlon , to NoVID
@tomkindlon@disabled.social avatar

Complex patterns of multimorbidity associated with severe and long COVID

https://www.nature.com/articles/s43856-024-00506-x

"Here we identify 679 diseases associated with an increased risk for severe (n = 672) and/or (n = 72) that span almost all clinical specialties and are strongly enriched in clusters of cardio-respiratory and endocrine-renal diseases."

@longcovid
@covid19
@novid

IrishMECFSAssociation , to longcovid group
@IrishMECFSAssociation@mastodon.ie avatar

Free online support group:

Tuesday, July 30
1 PM MT / 3 PM ET / 8 PM GB & Ireland

Topic: Reinvesting in Our Lives

Advance registration required.
https://batemanhornecenter.org/event/online-support-group-74/

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Reinvesting+in+Our+Lives&iso=20240730T13&p1=220&ah=1

@mecfs

@longcovid

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

"Staying within Your Energy Envelope by Modifying Tasks"

Recording: https://www.youtube.com/watch?v=RVJG6t1tjbE

Recap (comments & suggestions from others on topic): https://batemanhornecenter.org/wp-content/uploads/2024/06/20240516-LunchLearn.pdf

Slides: https://batemanhornecenter.org/wp-content/uploads/2024/05/Amy-Mooneys-BHC-Lunch-and-Learn-presentation-slides-pdf-version.pdf

@mecfs
@longcovid

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

In-person and online ME/CFS & long Covid conference this October in Sweden.

Looks like all the talks will be in English.

Automatic translation:
https://rme-nu.translate.goog/aktivitet/konferens-2024/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

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

@mecfs

Program: Endothelial dysfunction Ingrid Gurvin Rekeland Microcirculation, microclots in PASC and ME/CFS Resia Pretorius POTS – looking beyond sinus tachycardia Artur Fedorowski Neurovascular dysregulation during exercise in ME/CFS and Long COVID David Systrom Cognitive impairment in PASC and ME patients is mediated by orthostatic hemodynamic changes Suzanne Vernon Ongoing international treatment research Jonas Bergquist, Ingrid Gurvin Rekeland
ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Bateman Horne Center

    🌻Summer holidays can require communicating needs & boundaries. We created “Chronic Illness: What I Want You to Know” to assist you.

    🤝Share this customizable resource with your loved ones to help improve expectations & understanding. ➡

    https://bit.ly/3Gez76E

    @longcovid
    @mecfs

    Chronic Illness: What I Want You To Know I may look okay today, but chances are I will pay for the energy expended. I must pace...You can also help by understanding post-exertional malaise (PEM) and pacing. My symptoms and their level of severity can change quickly. I may have food sensitivities that can change over time. MERC Bateman Horne Center
    ALT
  • Reply
    • IrishMECFSAssociation , to longcovid group
    @IrishMECFSAssociation@mastodon.ie avatar

    Long Covid Advocacy Ireland post on melatonin with a focus on the situation in Ireland

    https://www.facebook.com/longcovidadvocacyireland/posts/pfbid0CptUKFxxoogZkZxJn4N8N1G59yBAGaxRbdf2ZoR3Y1v7mu3bf2EnRpsM4kD8akWjl

    @longcovid

    @mecfs

    IrishMECFSAssociation , to longcovid group
    @IrishMECFSAssociation@mastodon.ie avatar

    3 press releases on the same data from a Ireland Thinks random survey with a sample size of 1,024

    Links in image:
    https://denisnaughten.ie/2024/07/02/long-covid-severely-effects-1-4-of-patients-naughten/
    https://denisnaughten.ie/2024/06/27/spike-in-covid-will-have-long-term-health-implications-naughten/
    https://denisnaughten.ie/2024/06/25/over-84000-people-may-have-long-covid-for-more-than-a-year-naughten/

    14-page poll report https://denisnaughten.ie/wp-content/uploads/2024/06/long-covid-tracking-poll-report.pdf

    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    Long Covid severely effects 1/4 of patients – Naughten Publish on July,02 2024 by Denis Naughten Spike in COVID will have long term health implications – Naughten Publish on June,27 2024 by Denis Naughten Over 84,000 people may have long COVID for more than a year – Naughten Publish on June,25 2024 by Denis Naughten
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    The Summer 2024 Edition of The Solve ME Chronicle is Available Online

    https://solvecfs.org/wp-content/uploads/2024/06/SolveChronicleSummer2024.pdf

    @longcovid
    @mecfs

    From the Solve ME mailing list: "The Summer 2024 Edition of The Chronicle is Available Online Now! We're excited to share the newest edition of our flagship research and advocacy journal, The Chronicle!" Inside you'll find: - Our Visit to Yale to Honor Immunologist Dr. Akiko Iwasaki - Solve's 2024 Appropriations Asks - Highlights from Advocacy Week - Updates on Solve-Funded Research - Our Key Takeaways From the NIH Intramural ME/CFS Clinical Study - Solve Together Enrollment for Pioneering Clinical Studies - How to Make a Difference with DIY Fundraising - Study Using Solve Real-World Data Examines Joint Hypermobility - Reflections from Solve President & CEO Emily Taylor And more!" https://solvecfs.org/wp-content/uploads/2024/06/SolveChronicleSummer2024.pdf [Tom's comment: For people outside the US, the initial articles on advocacy may be of less interest than the later articles and research] The Solve Chronicle Summer 2024
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @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

    ===========
    @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.
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @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.
    ALT
  • Reply
    • tomkindlon , to longcovid group
    @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.
    ALT
  • Reply
    • 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 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

    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

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