Christoph Ströck @cstroeckw
Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder Vienna, Austria Joined January 2016-
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When I entered Christoph’s room this morning, he had blue lips, was as pale as the wall, and had an oxygen saturation of 87%. How is it that people w #MECFS like him have to literally kill themselves to be seen? Send an email to the Moonshot Committee and ask for inclusion today!
When I entered Christoph’s room this morning, he had blue lips, was as pale as the wall, and had an oxygen saturation of 87%. How is it that people w #MECFS like him have to literally kill themselves to be seen? Send an email to the Moonshot Committee and ask for inclusion today!
The virus can persist and replicate long term in tissue reservoirs, not just at autopsy. This includes in the brain, GI tract and the lung, possibly for months even years. We need to develop new antivirals. NIH Director Bertagnolli MD #LongCovid #ViralPersistence 👇
The virus can persist and replicate long term in tissue reservoirs, not just at autopsy. This includes in the brain, GI tract and the lung, possibly for months even years. We need to develop new antivirals. NIH Director Bertagnolli MD #LongCovid #ViralPersistence 👇 https://t.co/FoiVKu6fRL
If, at the end of a $1.2b spend by the NIH, we’re left with studies whose results have been known in the #MECFS and #Dysautonomia space for years, that would be a real shame.
Griffith University: 'Study finds significant overlap in neurochemicals from long COVID and ME/CFS patients' '“Long COVID and ME/CFS have a remarkably similar neurochemical signature, providing further evidence for a significant link between the two..' news.griffith.edu.au/2024/04/15/stu…
Does anyone know what's going on here? The link does not work for me, does it work for anyone else? If so, could you please put screenshots of the text in the comments? Thank you!
Does anyone know what's going on here? The link does not work for me, does it work for anyone else? If so, could you please put screenshots of the text in the comments? Thank you!
Am 12. Mai ab 14 Uhr gibt es wieder eine Protestaktion der @oeg_mecfs am Heldenplatz, um gegen die schlechte Versorgung der #MECFS Betroffenen zu protestieren. Ich werde dort auch lesen und ich freue mich, wenn möglichst viele von euch kommen, um ein Zeichen zu setzen!!
Am 12. Mai ab 14 Uhr gibt es wieder eine Protestaktion der @oeg_mecfs am Heldenplatz, um gegen die schlechte Versorgung der #MECFS Betroffenen zu protestieren. Ich werde dort auch lesen und ich freue mich, wenn möglichst viele von euch kommen, um ein Zeichen zu setzen!!
Our current joint ME/CFS call with @WWTF aims to advance our understanding of etiopathogenesis, diagnostics and/or therapy of post-acute infectious diseases such as ME/CFS and other PAIS (eg. Long Covid) with the cardinal symptom of PEM (!) More info: ⬇️ weandmecfs.org/news/understan…
Our current joint ME/CFS call with @WWTF aims to advance our understanding of etiopathogenesis, diagnostics and/or therapy of post-acute infectious diseases such as ME/CFS and other PAIS (eg. Long Covid) with the cardinal symptom of PEM (!) More info: ⬇️ weandmecfs.org/news/understan…
I have just sent my feedback to the LC Moonshot Committee - have you done so yet? #pwME #MECFS Thank you @RorPreston for the excellent template - great initiative!
I have just sent my feedback to the LC Moonshot Committee - have you done so yet? #pwME #MECFS Thank you @RorPreston for the excellent template - great initiative!
We need to invest in the longtime ME research NIH has historically blacklisted or we could easily watch $10B disappear without actually solving LC. Moonshot legislation needs to explicitly address & correct NIH’s institutional bias against funding bio research into ME.
We need to invest in the longtime ME research NIH has historically blacklisted or we could easily watch $10B disappear without actually solving LC. Moonshot legislation needs to explicitly address & correct NIH’s institutional bias against funding bio research into ME.
Really appreciate members of the @LCMoonshot vocalising their support (in email form!) for incorporating ME/CFS & wider IACCs explicitly into the Moonshot Proposal 🚀 Thank you Olena 😌 #MECFS #pwME #IACC
Really appreciate members of the @LCMoonshot vocalising their support (in email form!) for incorporating ME/CFS & wider IACCs explicitly into the Moonshot Proposal 🚀 Thank you Olena 😌 #MECFS #pwME #IACC
It's absolutely essential to get yourself heard on this matter! Please get active! Thank you, as always, for setting a good example, Carole!
It's absolutely essential to get yourself heard on this matter! Please get active! Thank you, as always, for setting a good example, Carole!
Lieber @johannes_rauch: Bitte unterstützen auch Sie #UniteToFight2024 mit Ihrem Aufruf! Bitte informieren Sie v.a. alle, die in den Nationalen Aktionsplan für postvir. Erkrankungen involviert sind! Ein toller Einblick in den neusten wiss. Stand. Auch 🇦🇹 ist vertreten. DANKE!
Lieber @johannes_rauch: Bitte unterstützen auch Sie #UniteToFight2024 mit Ihrem Aufruf! Bitte informieren Sie v.a. alle, die in den Nationalen Aktionsplan für postvir. Erkrankungen involviert sind! Ein toller Einblick in den neusten wiss. Stand. Auch 🇦🇹 ist vertreten. DANKE!
Important to include #ME research done prior to the Covid pandemic. So many #LongCovid patients meet the criteria for #MECFS and so many brilliant researchers have contributed papers and studies, it would be a complete waste of $ to start from scratch as well as denying ME.
Important to include #ME research done prior to the Covid pandemic. So many #LongCovid patients meet the criteria for #MECFS and so many brilliant researchers have contributed papers and studies, it would be a complete waste of $ to start from scratch as well as denying ME.
@cstroeckw Have emailed Sen Sanders including @RorPreston ‘s letter. It’s critical that as many ME patients as possible put forward reasons to include us in the study.
Thank you, @Karl_Lauterbach for advocating for #MECFS. Thank you to @U2Fight_World for setting the stage and getting this going!
Thank you, @Karl_Lauterbach for advocating for #MECFS. Thank you to @U2Fight_World for setting the stage and getting this going!
Bhupesh K Prusty @BhupeshPrusty
15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Hannah Davis @ahandvanish
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Michael Stingl @neurostingl
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Jonas R. Kunst (@kuns.. @KunstJonas
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Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
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Sibylle Dahrendorf �.. @sibylle_berlin
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S Blitshteyn MD, FAAN.. @dysclinic
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Dr Asad Khan FRCP FRA.. @doctorasadkhan
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Bettina Grande @GrandeBettina
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TikiaJan Autodéfense.. @grevepaysbasque
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gzbly6w7jng @e26f4gmqsksux5
0 Followers 47 Following The team is a company that provides short-term investment income in cryptocurrency. With a rigorous plan, you can make $500 to $5,000. Click the link to join
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Ton @Earthynerd
762 Followers 4K Following Redheaded carbon-based lifeform of the female variety. Science rocks, rolls, strikes, slips. Fmr USMC brat. Kindness is the best! 🤗😊Opinions are my own 🌻
OMFCharityMugs @BFWoodburn
8 Followers 156 Following Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵
TopazStudios.com @TopazStudiosCOM
2K Followers 5K Following ONE chronic #illness to #disabled—follow @RenegadeRes—#longcovid #ckd #IgG #kidney #mecfs #pots #mcas #dysautonomia #pem #mitochondria $ltnc #lockdin #health
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15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
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16K Followers 1K Following Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 723 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Dr. Daniel Loy @loy_daniel_de
6K Followers 1K Following Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
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15K Followers 220 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
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6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
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18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
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15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
S Blitshteyn MD, FAAN.. @dysclinic
20K Followers 1K Following Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
Bettina Grande @GrandeBettina
7K Followers 1K Following Psychologische Psychotherapeutin, Praxis in Heidelberg. Aktiv in Aufklärung über und gegen die Psychologisierung von #MECFS. #PEM ist nicht verhandelbar!
Anil van der Zee © @AnilvanderZee
9K Followers 823 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
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8K Followers 500 Following physician-researcher, paediatrician, ME/CFS since 2016. This account is about science, esp. CFS (may also visit: @kinderverstehen: on child development (German)
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14K Followers 577 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
Dysautonomia Intl. @Dysautonomia
26K Followers 344 Following Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
Dr. Sabine Hermisson @SabineHermisson
5K Followers 2K Following PD Dr. (empirical education research, religion) mother of Mila who suffers from very severe ME/CFS (Bell 0) M: @[email protected]
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Miles W. Griffis @mileswgriffis
4K Followers 1K Following Co-founder/editor @thesicktimes Columnist @highcountrynews [email protected] #LongCovid 🇵🇸
emily fraser 🌿🐌.. @emilyesfraser
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507 Followers 791 Following Account used sporadically to engage with research. Tweets delete.
Olena ‘Olenka’ Sa.. @coco_chatel
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Dr Anna Brooks @DrAnnaNZ
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577K Followers 0 Following Photos from the history of physics | © with mentioned Archives. Shared for educational purposes. Einstein portrait © Ullsteinbild. Subscribe for curated papers.
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652 Followers 125 Following Niedergelassener Psychotherapeut, Psychoanalytiker, Psychosomatik, Psychotherapieforschung, Operationalisierte Psychodynamische Diagnostik OPD
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Professor Benedict D .. @BenedictNeuro
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Noah Smith 🐇🇺�.. @Noahpinion
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Beff Jezos — e/acc .. @BasedBeffJezos
102K Followers 2K Following chief accelerator & founder @ e/acc // thermodynamic priest // Kardashev gradient climber // memetic warlord // building @extropic_ai
Marco Wetzel (is figh.. @Gmwetz
2K Followers 829 Following Founder of @U2Fight_world // #UniteToFight2024 // #LongCovid and #MECFS advocate // #longcovid patient
Kalo_127.0.0.1 🇺�.. @Kalo_Kathi
2K Followers 735 Following "I’m too clumsy to be around fragile masculinity." Rue de la Gack Expertin, IPO-Junkie, ex-Editor, IT-Security, "Engine of hell" Himmel: https://t.co/YQeHkiupne
PJ Morrison @wastelessme
2K Followers 1K Following I was born-I will die-in between I try- previously a Crisis Management Pro-Troubleshooter & Late-night comic-Now health advocating-LongCovid 45 months
Claus Ernst 🌻→ @.. @ClausErnst
2K Followers 1K Following Animated explainer videos, Moderate ME from initial 'mild' SARS-CoV-2 infection 2021. 39 months + counting. Mastodon → https://t.co/aA7or0WZ8r
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1K Followers 1K Following Co-Founder of #UniteToFight2024 //Program Manager // Pharmacist and Political Scientist // Hauler since 2020
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15K Followers 1K Following Head of Lab, Professor Basic Immunology, T cell expert. Mass blocks reinitiated on abusive accounts and those spreading disinformation.
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Marc Andreessen 🇺�.. @pmarca
1.4M Followers 24K Following Techno-optimist. E/acc. Technology brother. Move Fast and Make Things. p(Doom) = 0; p(“1984”) = not 0.
Bioenergetic Space @bioenergy_space
4K Followers 48 Following Building on Ray Peat's ideas. Energy creates life, and life creates energy. Ray Quotes: https://t.co/BXOF6kK6s3
Lilly Blaudszun @LillyBlaudszun
49K Followers 3K Following politische influencerin außer dienst | heute: 80% jura, 60% politische kommunikation & 50% musikkonsum
NYT Health @NYTHealth
1.2M Followers 121 Following Health and medical news from The NYT's Health & Science desk. Sign up for the Science Times email, in your inbox every Tuesday: https://t.co/kpdN2C1hDy
Daniel Martins (MD, P.. @DanielArturAM
505 Followers 572 Following Institute of Psychiatry, KCL; NIHR Maudsley BRC | Psychiatry - Experimental medicine, Neuroimaging, Biomarkers
Xavier Gimeno Torrent @Xavier_Gimeno
944 Followers 526 Following Sociòleg, investigador i traductor d'obres de sociologia | Sociólogo y traductor de obras de sociología | Social Scientist & Sociology Books Translator.
chantalbritt.bsky.soc.. @ChantalBritt
4K Followers 4K Following @bfh_hesb @LongCovidCH @LongCovidKinder @EnovatNet #PPI #ScienceCom #ProVaxx #Globukalypse ex @Swiss3RCC @SCAHTorg @ESCMID @SAKK_ch @swissinfo @Bloomberg
MariaKatharina Moser @mariakmoser
2K Followers 1K Following #Pfarrerin, Sozialethikerin, Direktorin der #Diakonie Österreich, twittert zu ethischen, theologischen, sozial- und gesellschaftspolitischen sowie Gender-Fragen#LongCovid is complex to diagnose and treat, so we need #biomarkers! 1. to confirm viral persistence, and 2. to map the failing/overactive immune response. So we tried to hit two birds with one stone using digital transcriptomics 👇👇 (1/n) thelancet.com/journals/lanmi…
One of my favorite albums of all time. No skips.
Guys, I love Taylor the most, but ridiculous to call Courtney Love a nobody. She’s an icon. And to say she’s just a famous guy’s ex-wife is wrong and misogynistic. Give the Hole album Live Through This a listen. Pitchfork gave it a 10 for a reason. Masterpiece.
Get your voice going ... #UniteToFight2024
#UniteToFigth2024 goes to the international companies 🌎 We were invited to present our project as an external contribution during a theme week. Here we will speak online to around 1,000 participants. In addition to the conference itself, we will of course focus in particular on…
Loving reminder…it’s on my list for this week. 💖 #MECFS
Have you emailed the Long Covid HELP Committee about the Moonshot Proposal yet, and the need to include #MECFS and other infection-associated chronic illnesses explicitly in the funding...? 🚀 [email protected] If you have feel free to pop a comment below too,…
Pro tip, meal prepping is a great way to ensure that you always have food that is cold, a little old, and not what you’re in the mood for
Microsoft CTO Kevin Scott: when computers surpass human abilities that doesn't take away our enjoyment of those things; such as chess, which has never been more popular
The virus can persist and replicate long term in tissue reservoirs, not just at autopsy. This includes in the brain, GI tract and the lung, possibly for months even years. We need to develop new antivirals. NIH Director Bertagnolli MD #LongCovid #ViralPersistence 👇
Oh my god, you guys- @NIHDirector just said #longcovid is live, replicating virus. "We see evidence of persistent live virus in humans in various tissue reservoirs, including surrounding nerves, the brain, the GI tract, to the lung." FINALLY. medpagetoday.com/opinion/faustf…
Ok wen seh ich aller dort? Also diesmal in echt, kenn ja nur eurer anonymen Profilbilder :)
If, at the end of a $1.2b spend by the NIH, we’re left with studies whose results have been known in the #MECFS and #Dysautonomia space for years, that would be a real shame.
One of the reasons I’m passionate about making sure we ground a portion of future #LongCOVID research within the existing body of infection-associated chronic illnesses is because I don’t want to waste resources if we get more funding
If, at the end of a $1.2b spend by the NIH, we’re left with studies whose results have been known in the #MECFS and #Dysautonomia space for years, that would be a real shame.
Griffith University: 'Study finds significant overlap in neurochemicals from long COVID and ME/CFS patients' '“Long COVID and ME/CFS have a remarkably similar neurochemical signature, providing further evidence for a significant link between the two..' news.griffith.edu.au/2024/04/15/stu…
I love how they give updates on enrollment progress. Wish more trials would do this. It gives hope to patients that there’s actual progress, but in the direct interest of the actual trial, it also encourages participation
Our Rapamycin Trial has surpassed 70 enrollees! We are well on our way to our goal of 100 participants. #ME patients need treatments, & Simmaron foundation is doing that work. Learn more about our trial here. #MECFS #POTS #LongCovid simmaronresearch.com/rapamycin-trial
@cstroeckw Hello @cstroeckw. We just tested the link and it works for us. But here's the long version of the link, perhaps using it would help? Let us know if it still isn't working for you. mobilize4change.org/JVTdchh
Dual rare genetic diseases in five pediatric patients: insights from next-generation diagnostic methods - Orphanet Journal of Rare Diseases ojrd.biomedcentral.com/articles/10.11…
@mildTin This is why the idea that government is driven by some kind of vast conspiracy is so laughable. Like, “sirs, have you ever tried to get people to agree on anything?”
President Trump calls me an ultra-left radical. I’m soooo liberal that his emissaries asked me to be his VP. I respectfully declined the offer. I am against President Trump, and President Biden can’t win. Judging by his new website, it looks like President Trump knows who…
Done!
This is an excellent template for #MECFS patients and allies worldwide to use when writing to the LC Moonshot Committee! If you haven’t sent it yet, don’t wait! Make yourself heard! Thank you, @RorPreston!
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