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

Follow-up of Cardiopulmonary Responses Using Submaximal Exercise Test in Older Adults with -19

https://www.e-agmr.org/journal/view.php?doi=10.4235/agmr.24.0093

" , older adults showed statistically significant differences in HR, SBP, DBP, O2 sat, RPE, leg fatigue, 6MWT time, & 1-min-STST step numbers at 3, 6, & 12 months (P < 0.001)."

@longcovid
LC
@covid19
@novid @novid
@auscovid19

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

tomkindlon , to NoVID
@tomkindlon@disabled.social avatar

Insights from an N3C RECOVER EHR-based cohort study characterizing reinfections and

https://www.nature.com/articles/s43856-024-00539-2

"The largest proportion of Long COVID diagnoses occur among individuals with a first reinfection in the Delta epoch. The rate of Long COVID diagnoses has been increasing with each successive Omicron variant"

@longcovid

@covid19
@novid @novid

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

Press release:
"Brain inflammation triggers muscle weakness after infections: In fruit flies and mice, scientists ID possible way to block muscle fatigue in , other diseases"

https://www.eurekalert.org/news-releases/1050851

Plausible this could also be relevant in ME/CFS

Hashtags:
@longcovid
@mecfs

@covid19

tomkindlon , to longcovid group
@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

Hashtags:
@mecfs

Hashtags:
@longcovid

1/

Photo of a woman in bed with her eyes closed “All activity, whether physical, cognitive, or emotional, depletes the little energy I have,” says Kari Cotton, 61, who has had ME for eight years. If it’s too much, she gets PEM. Then she can be bedridden for several days, with chills, tremors, pain, and sleep problems. You can read more about this in this article. (Photo: Private) Why does physical activity exacerbate symptoms in ME/CFS and long Covid patients? “It can resemble overtraining in athletes,” says Professor Nina Vøllestad.
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    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Useful 2-page document from Bateman Horne Center

    "Pacing for PEM/PESE [post-exertional malaise/post-exertional symptom exacerbation]"

    https://batemanhornecenter.org/wp-content/uploads/2023/05/Pacing-for-PEM-PESE-05_2023.pdf

    @mecfs
    @longcovid

    1/

    PACING FOR PEM/PESE Pacing for a dysfunctional metabolic system (e.g., ME/CFS and Long COVID (LC)) is a lifestyle strategy for managing exertion and recovery. It is more nuanced than traditional approaches for energy conservation and modifications as compared to other patient populations. Successful pacing considers the multifaceted impacts of physical, cognitive, orthostatic, sensory, and the often neglected emotional domain. It must account for exertion prior to the task, during the task, and post-task. Pacing must be preemptively used to prevent dangerous energy expenditure. People with ME/CFS and LC have a premature ventilatory anaerobic threshold as identified on 2-day CPET (Cardiopulmonary Exercise Testing) which can further decrease post-exertion. In other words, these patients use the lactic acid system with minimal exertion or activity, and on “crash days”, it takes even less effort before they move into the lactic acid system with activity. Pacing interrupts the push-crash cycle and protects against PEM/PESE. REST Resting is the single most important pacing strategy and mitigates further cellular damage. BROKEN BATTERY METAPHOR The energy systems in ME/CFS and LC are like a battery which never fully charges and drains very quickly. The body doesn’t properly generate energy at a cellular level.
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    • 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

    I think this 2-page piece "Energy Conservation" contains lots of useful tips/suggestions in a short article👏👍

    "Some tips for saving energy, reducing symptoms of PEM, & recharging your body"
    https://batemanhornecenter.org/wp-content/uploads/2023/12/Energy-Conservation-006-20231206.pdf

    Links to
    https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Dark_Blue_Survival_Guide_Complete.pdf

    @mecfs
    @longcovid

    Energy Conservation There are many environmental triggers and stimuli that can contribute to post-exertional malaise (PEM) and prolong recovery from a crash/relapse. ● When you are in a crash/flare-up, reduce all energy demands to allow your body to recharge. ● When you are not in a crash, it is important to prioritize your energy for what is most important. Here are some tips for saving energy, reducing symptoms of PEM, and recharging your body: Physical Activity Exertion Use a disability placard Use a wheelchair or mobility aids or devices Sit down while showering Ask others for help Learn to say “no” Keep essential items nearby Put chairs throughout your living environment to sit and rest Take rest breaks when talking Use joint braces Prioritize and plan movements Orthostatic Reduce time in upright positions Lie down frequently Elevate legs frequently Increase fluid intake Increase sodium intake (first, check with your medical provider) Increase electrolyte intake Wear compression clothing when upright (thigh-high or abdominal are most helpful) Physiological Body temperature may fluctuate, have layers to put on and take off Use cold packs on neck or other body parts to reduce overheating Emotional Minimize emotionally triggering stimuli Positive & negative emotions use energy Avoid emotionally charged interactions, conversations, or media Use calming techniques Observe your breathing Give yourself permission to rest Batemanhornecenter.org Energy_Conservation_Tips_12_2023
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/
    I think this 2-page piece "Energy Conservation" contains lots of useful tips/suggestions in a short article

    https://batemanhornecenter.org/wp-content/uploads/2023/12/Energy-Conservation-006-20231206.pdf

    @mecfs @longcovid

    Energy Conservation Cognitive/Brain Activity Prioritize & plan cognitive efforts Limit reading, speaking, texting, watching media (computer, TV, phone, screentime) Avoid making big decisions in a crash Reduce or shorten periods of ● Problem solving ● Concentrating ● Multitasking Sensory and Environmental Stimuli Sight/Visual Eye mask Tinted lenses Hat with visor Dim electronics Blue light glasses Sound Earplugs Noise-canceling headphones Noise machines Touch Loose clothing Minimize abrasive linens and bedding Weighted blankets (deep pressure can be soothing for some) Reduce contact with chemical products (e.g., hygiene or cleaning products) Rest in comfortable positions that help you relax Use joint braces or other supports when resting Odor Minimize cooking odors Avoid chemical odors Reduce environmental odors (candles, perfumes, etc.) Minimize chemical products For more ideas for managing your symptoms, check out the PEM Crash Survival Guide. Batemanhornecenter.org Energy_Conservation_Tips_12_2023
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    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    New exciting US research

    Tissue-based T cell activation and viral RNA persist for up to 2 years after infection

    https://www.science.org/doi/10.1126/scitranslmed.adk3295

    ====
    Hashtags:
    @longcovid

    @covid19
    @novid @novid
    @auscovid19

    1/

    Editor’s summary The term “Long Covid” covers a diverse array of symptoms that an individual might experience weeks to years after infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Many drivers of Long Covid have been proposed, with supporting data for each. Here, Peluso et al. provide compelling evidence for two potential contributors: persistent SARS-CoV-2 and aberrant T cell activation. The authors used whole-body positron emission tomography imaging with a tracer that selectively tags activated T cells to show that those with Long Covid had certain tissues that were enriched for activated T cells in comparison with those without Long Covid. Moreover, because the gut was one of the sites of activated T cell enrichment, the authors analyzed gut biopsies from a subset of individuals with Long Covid. In these samples, the authors were able to identify the presence of SARS-CoV-2 RNA; this feature was consistent across all five samples analyzed. These data suggest that viral persistence and sustained immune activation are linked to Long Covid. —Courtney Malo
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    3/

    "We performed whole-body positron emission tomography imaging in a well-characterized cohort of 24 participants at time points ranging from 27 to 910 days after acute SARS-CoV-2 infection using the radiopharmaceutical agent [18 F]F-AraG, a selective tracer that allows for anatomical quantitation of activated T lymphocytes"

    Hashtags:
    @longcovid

    @covid19

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

    Long COVID Web:

    Please join us at our upcoming webinar on "Updates from Research in the USA". Hear from Drs. Joseph Breen and Ziyad Al-Aly.

    When: Tuesday, July 16, 2024, 1pm – 2pm ET

    To learn more & register: https://bit.ly/3VZ0mZY

    Hashtags:
    @longcovid

    @covid19

    @auscovid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    Long Covid talk titles:

    1. Update on the NIH RECOVER Program with Joseph Breen, NIAID

    2. Update on Long COVID with Ziyad Al-Aly, MD, Chief of Research and Development at VA St. Louis Health Care System

    @longcovid @covid19 @auscovid19

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

    Delighted to announce these free events this October in / / airport/ / / with US expert Dr David Tuller @david

    https://irishmecfs.org/blog/oct-2024-dr-david-tullers-6-free-irish-talks-in-braycorkdublingalwaylimericksligo-followed-by-free-teacoffee-biscuits

    Also a way to make new contacts or rekindle old acquaintances

    Please share widely 🙏

    @mecfs
    Hashtags:
    @longcovid

    Dr David Tuller free talks and question-and-answer sessions in Dublin (Oct 20), Bray (Oct 21), Cork (Oct 23), Limerick (Oct 25), Galway (Oct 26) & Sligo (Oct 28). Followed by chance to chat with others over free tea/coffee & biscuits. Photo of Dr David Tuller Title: “Bad Science, Bad Medicine: How flawed biopsychosocial studies on ME, long Covid, and related conditions harm patients" Irish ME/CFS Association logo
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    • 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
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    • tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    New:
    Illness presentation and quality of life in / and condition: a pilot Australian cross-sectional study

    Free:
    https://link.springer.com/article/10.1007/s11136-024-03710-3

    @longcovid
    @mecfs

    1/

    Plain English summary Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID-19 Condition (PCC) are chronic illnesses that affect multiple body systems. While the exact biological causes of these illnesses are not yet known, people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) experience similar symptoms and difficulties in daily functioning. However, specific similarities and differences, which may warrant tailored approaches to management, have not yet been investigated in detail. Additionally, poor recognition of the impacts of these illnesses has prevented pwME/CFS and pwPCC from accessing necessary care. As the first comprehensive investigation of the illness experiences of pwME/CFS and pwPCC in Australia, this study serves to provide evidence to inform care pathways and changes to health policies, thereby ensuring that care aligns with patients’ needs. Few differences were observed in the symptoms experienced by pwME/CFS and pwPCC in this study. Importantly, post-exertional malaise—the defining feature of ME/CFS—was equally as common, severe and frequent among pwPCC. The ME/CFS and PCC groups returned similar scores across all quality of life categories, indicating comparable effects on health and wellbeing. For both illness groups, all aspects of quality of life were considerably poorer when compared with people without acute or chronic illness.
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    New:
    Illness presentation and quality of life in / and condition: a pilot Australian cross-sectional study

    Free:
    https://link.springer.com/article/10.1007/s11136-024-03710-3

    @longcovid @mecfs

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

    New US research:
    Case-control study on post-COVID-19 conditions [on] potential risk factors

    Free
    https://www.sciencedirect.com/science/article/pii/S2589004224016316

    "Our findings suggest severity of acute infection & history of CPD, , (), or as risk factors for "

    @longcovid

    @covid19

    @mecfs
    1/

    Summary Post-COVID-19 conditions (long COVID) has impacted many individuals, yet risk factors for this condition are poorly understood. This retrospective analysis of 88,943 COVID-19 patients at a multi-state US health system compares phenotypes, laboratory tests, medication orders, and outcomes for 1,086 long-COVID patients and their matched controls. We found that history of chronic pulmonary disease (CPD) (odds ratio: 1.9, 95% CI: [1.5, 2.6]), migraine (OR: 2.2, [1.6, 3.1]), and fibromyalgia (OR: 2.3, [1.3, 3.8]) were more common for long-COVID patients. During the acute infection phase long-COVID patients exhibited high triglycerides, low HDL cholesterol, and a high neutrophil-lymphocyte ratio; and were more likely hospitalized (5% vs 1%). Our findings suggest severity of acute infection and history of CPD, migraine, Chronic Fatigue Syndrome (CFS), or fibromyalgia as risk factors for long COVID. These results suggest that suppressing acute disease severity proactively, especially in patients at high risk, can reduce incidence of long COVID.
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    • tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    New US research:

    Case-control study on post-COVID-19 conditions reveals severe acute infection and chronic pulmonary disease as potential risk factors

    Free:

    https://www.sciencedirect.com/science/article/pii/S2589004224016316

    Hashtags:
    @longcovid

    @covid19 @mecfs

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