longcovid group

IrishMECFSAssociation ,
@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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    • tomkindlon ,
    @tomkindlon@disabled.social avatar

    This is a project I have been working on for a while.

    Grateful to David Tuller and the local hosts: Vera Kindlon (Assoc trustee), Audrey Lodge, Ashling O’Leary & Michelle Dinn, Sarah Warde, Orla Ní Chomhraí (Assoc trustee) & Ruth Flood @roothflud . 👍


    @IrishMECFSAssociation @david @mecfs @longcovid

    IrishMECFSAssociation ,
    @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

    EricCarroll ,
    @EricCarroll@zeroes.ca avatar

    ‘Visionary’ study finds inflammation, evidence of virus years after infection

    https://www.statnews.com/2024/07/03/long-covid-ucsf-study-finds-virus-presence-years-post-infection/

    > A "visionary" new study finds inflammation and evidence of the Covid virus years after initial infection. ... In some cases, the team followed patients up to 900 days, making it one of the longest studies of ... they report what looked like lingering virus in participants’ guts. Even those who’d had Covid but no continuing symptoms had different results than those who’d never been infected.

    @longcovid

    IrishMECFSAssociation ,
    @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
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    • tomkindlon ,
    @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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  • Reply
    • 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

    Frieke72 ,
    @Frieke72@mastodon.social avatar

    @tomkindlon one of the most important factors imho is presence of PEM. That makes for a big difference in managing symptoms / trying to live with LongCovid or ME or CFS

    @longcovid @mecfs

    oftencalledcathy ,
    @oftencalledcathy@mastodon.ie avatar

    This was the week I learned about ExWell Medical, an exercise programme that older people are referred to by their GPs often after covid infections. The programme has an induction that includes baseline fitness test with no monitoring of heart rate, blood pressure etc (according to a friend). Surely this is contraindicated for etc? @longcovid

    Step 4 To finish you will be asked to take part in some simple baseline fitness tests. This is done so that when we re-test every 3 months you will be able to compare and see your improvement. The tests include; • 6 minute time trial - to test your cardiovascular capacity. • Handgrip test - to measure your upper body strength • 30 secs sit to stand - to measure your lower body strength. • A timed up and go test. - standing up and walking around a cone 3 metres in front of you. • A duel task test - same as the timed up and go test but with an added cognative test.
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  • Expand (6)
  • Collapse (6)
    • Frieke72 ,
    @Frieke72@mastodon.social avatar

    @oftencalledcathy it was a bit cynical response on this irresponsible way of testing. Analogy to Shoot them all and God will sort them out 🫣
    @longcovid

    ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    @oftencalledcathy
    First of all, Yikes! 😬

    Second, is a "duel" task test a typo? I mean, it does often feel like I'm dueling with certain doctors, but I hope they don't make it a literal duel! ⚔️

    PS. They also offer a "cognative" test which is cause for concern…

    I don't care about spelling errors from regular folks - I make them too! But errors in official documents make me feel like they don't pay attention to details, so I worry that they also don't pay attention to patients?!

    @longcovid

    tomkindlon ,
    @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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  • Reply
    • ahimsa_pdx ,
    @ahimsa_pdx@disabled.social avatar

    This story - "A life derailed by long COVID" - is from 2023 but I just found it:
    https://virginiamercury.com/2023/09/06/a-life-derailed-by-long-covid/

    Classic story of trying to push through symptoms, getting worse, and finally meeting ME/CFS diagnostic criteria:

    "Pretty soon, I was feeling worse than I had during my acute infection. But I tried to carry on and returned to my job…"

    @mecfs @longcovid

    Over the next 2 months, I continued to wake up exhausted, lost 25 pounds, felt a constant malaise, suffered insomnia, and my heart rate would spike after eating certain foods or standing up. I was unable to resume my normal runs and bike rides because it felt like my muscles weren’t working properly. I traded my runs and my intense mountain bike rides for gentle walks. My doctors told me I’d feel better soon and that all my labs were normal. Naturally, I looked into my medical condition. My symptoms exactly match those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is a chronic condition with a low recovery rate that has no U.S. Drug and Food Administration approved treatments and is the most underfunded disease per patient burden in the US.
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    • 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

    ===========
    @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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  • Reply
    • 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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  • Reply
    • 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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  • Reply
    • tomkindlon ,
    @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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  • Reply
    • 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

    wildwoila ,
    @wildwoila@aus.social avatar

    @tomkindlon
    Interesting! Great to see a study confirm anecdotal/survey evidence. Though worth noting that the sample size was too small to make any direct call on CFS: only one person had CFS before getting covid.

    @longcovid @covid19 @mecfs

    tomkindlon ,
    @tomkindlon@disabled.social avatar

    Subjective brain fog: a four-dimensional characterization in 25,796 participants

    https://pubmed.ncbi.nlm.nih.gov/38911226/

    "28.2% reported experiencing brain fog, who were generally older (mean brain fog 35.7 ± 11.9 years vs. 32.8 ± 11.6 years, p < 0.0001) and more likely to be female (OR = 1.2, p < 0.001)"

    Hashtags:
    @longcovid

    @covid19

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    "Comorbidities included -19 (OR = 3.8, p < 0.0001), (OR = 2.4, p < 0.0001), and higher disability assessment scores (MIDAS) (+34.1%, all p < 0.0001)."

    Hashtags:
    @longcovid
    @covid19 @novid @novid @auscovid19

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