Paul Stavrou 🇬🇷🇺🇸
@PaulStavrou3
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Writer || Game Designer ||
Milwaukee, WI
Joined May 2022
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so I should be fine. I think seeing so many promising drugs fail showed me I can’t bank on something coming in the next few years. I’ve been getting worse these past 4 years because I haven’t been pacing properly. I finally need to start. Good luck to you all, and thank you.
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I think I’m done with Twitter for now. If I come back, it won’t be for a very long time. I’m okay, but this site is such a cesspool, and I can’t keep doomscrolling nonstop. It’s just no good for my mental health. I have a good support system at home and supportive friends 1/2
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#LongCovid #MECFS Prof @C_Scheibenbogen at the #LongCovidKongress: Immunadsorption (IA) results are promising for a subgroup of patients. But it's no cure as B cells keep producing autoantibodies (AABs). Mouse model studies provide best evidence for a causal role of AABs. 1/
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The emergence of #LongCovid offers scientists a unique opportunity to untangle “Osler’s Web,” the unsolved mystery of #MECFS and other chronic post-infectious conditions. Read the new @ScienceTM Viewpoint: https://t.co/h1phtbv79H
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"This scrappy group made swift grants to studies seeking to find root causes & develop viable therapies... They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise." 'We have so many ideas.. but not enough money.'" — @patientled
NYT columnist @zeynep has written about our group and how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people. She's very kindly chosen us as the nonprofit to donate to of the year, and we're deeply honored!
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Dr. Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration have designed a study to examine the link between these three observations in people with ME/CFS, Long COVID, and POTS. https://t.co/UnZEQtKP6V
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The Sick Times: '“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump' 'There may be other potential openings for Long COVID research, such as more leniency at the FDA & funding from the defense department' https://t.co/9juxeZERnQ
thesicktimes.org
As incoming President Donald Trump has announced a growing list of top nominees who’ve denied science and public health, people with Long COVID are preparing for an administration likely to be less...
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Die #LongCovid Forschung von 150 Mio. wird nach Rücksprache mit Finanzminister Jörg Kukies auch bei vorläufiger Haushaltsführung nicht gekürzt. LongCovid Betroffene dürfen nicht für das Ampel aus leiden. Es muss eine Heilung gefunden werden
#LongCovidKongress in Berlin: @Karl_Lauterbach kündigt an, dass nach Absprache mit Finanzminister Kukies die geplante Förderung von #LongCovid-Forschung in 2025 auch ohne beschlossenen Haushalt ausgezahlt werden kann
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From an article on the website of The American Psychological Association: “Long Covid is not a psychological condition. [...] It is a medical condition, and it should be treated as such.” https://t.co/XiUJsyEsG3
apa.org
New research findings help psychologists support their patients battling the condition, because treating issues like depression and anxiety are affected by chronic conditions.
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“We do not want LC research to succeed”
NIAID director Jeanne Marrazzo at Recover TLC webinar today regarding including ME research in long Covid research at NIH. Noting that money is specifically for LC research: "People don't want to hear this, but it's important to be honest right now."
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Pharmacy Times: 'IVIG Demonstrates Effectiveness in Several Neuroimmune Conditions, Indicating Potential for Long COVID Treatment' Of particular interest is the potential use of IVIG in treating myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) https://t.co/INuzcDyhvi
pharmacytimes.com
Intravenous immunoglobulin (IVIG) has proven efficacy in autoimmune neuropathies, with mixed but promising outcomes in severe COVID-19 cases and post-acute sequelae of SARS-CoV-2 infection trials.
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@RobertKennedyJr If you want to make an impact with chronic illness/disease…this would be an apt spot to target
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The more I think about it, there hasn’t been a time in the past 4 years of my illness where I’ve paced effectively. It’s been constant crashing which led me to being on the more severe end of moderate. How common is it to improve a good amount if you pace effectively? #MECFS
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Excellent paper on exercise in ME/CFS: Sedentary people took an average of 2 days to recover, where people with ME took an average of 2 WEEKS. One person with ME never recovered, even after a year. https://t.co/sQw0p15KUo
#pwME #LongCovid
mdpi.com
Background and Objectives: Post-exertional malaise (PEM) is the hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but there has been little effort to quantitate the duration of...
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Okay, is anyone preparing a campaign to RFK soon? If not, we'll have to start a community action ASAP @LCMoonshot @MEActNet @PlzSolveCFS @patientled @Dysautonomia
@exceedhergrasp1 @ahandvanish @LisaAMcCorkell @mildTin @loscharlos @meighanstone @JanetDafoe @AnilvanderZee
Irrespective of what you think of RFK, the fact that not every major #MECFS charity has been on his ass publicly (i.e., here on X) regarding this crisis is the biggest blunder one can imagine. I hope the community can organise/do/try it themselves! Please engage!
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Re-sharing what was on Page 17 of the 22 page 'Reforming the National Institutes of Health Framework for Discussion' by Chair Cathy McMorris Rodgers Really feels like this part could have been avoidable had hubris not been the road taken in 2020-2021 here.
Nature: 'Major biomedical funder NIH poised for massive reform under Trump 2.0' 'Sweeping changes and more research scrutiny could be on the way for the US National Institutes of Health' 'The NIH has been a frequent target of Trump...' https://t.co/u4sXu1oXzB
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Solid study out of Hungary showing and measuring #mitochindrial dysfunction in #LongCovid. Including discussion of potential #biomarkers for MD: https://t.co/XJESBVlpi6
link.springer.com
GeroScience - Coronavirus disease 2019 (COVID-19) can lead to severe acute respiratory syndrome, and while most individuals recover within weeks, approximately 30–40% experience persistent...
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Het lijkt erop dat RFK Jr. goed op de hoogte is over ME, de ernst ervan en de geschiedenis. Laten we hopen dat er onder zijn leiding in Amerika wat vorderingen gemaakt gaan worden
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