Billy Hanlon @bhanlon15
Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally minnesotamecfs.org Minneapolis, MN Joined November 2018-
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This is a very common problem in the #LongCovid and #MECFS community.
This is a very common problem in the #LongCovid and #MECFS community.
One of the hypotheses for the transition from acute to chronic illness in #MECFS #LongCovid and similar conditions is that the immune system gets 'stuck' ON and all the stuff that goes wrong (downstream) is a consequences of this initial 'block'. Un-blocking it and getting it to…
So excited for what’s ahead for Metrodora under Dr Goodman’s leadership. He spent 20+ yrs at Mayo, yet made the leap to join us to build the best medical center in the country for patients with complex conditions. He’s a pioneer in the space and we’re so lucky to work with him.
Provider-oriented & patient-accessible! These webinars ( at least 4!) will be led by Dr. Peter Rowe & include a lived experience segment. There will be a capstone webinar made up of a Q & A segment. Please submit questions to: [email protected].
In this #MedEd webinar you will 1) Learn evidence-based options for treating ME/CFS 2) Understand IOM diagnostic criteria/evidence behind criteria 3) Understand clinical presentation, epidemiology, and impact of pediatric ME/CFS 4) Learn evidence-based options for treating ME/CFS
Thurs, May 9th @ 1pm. @MEActMaryland will facilitate a pre-recorded webinar series: "The Pediatric ME (Myalgic Encephalomyelitis) Webinar Series by Dr. Peter Rowe: “Evidence-Based Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS"
Really exciting & so important! So many media outlets & journalists have completely abandoned their duty to report on #LongCovid & hold folks accountable on this issue. Having an entire outlet & team dedicated to this is so huge.. congrats @mileswgriffis & @betsyladyzhets 👏🙏
Really exciting & so important! So many media outlets & journalists have completely abandoned their duty to report on #LongCovid & hold folks accountable on this issue. Having an entire outlet & team dedicated to this is so huge.. congrats @mileswgriffis & @betsyladyzhets 👏🙏
Y’all, I can’t. Mile 9: “my gut hurts so bad!” Mile 15: “I’m cramping so bad.” Literally rolling away in a wheelchair at the end of the marathon. Idk who needs to hear this besides this creator but REST AND STAY HOME WHEN YOU’RE SICK.
« I used to run twice a week, now I need a mobility scooter: The frontline medics who caught coronavirus at work but are now crippled by long Covid and fighting for damages » dailymail.co.uk/health/article…
Really feel like I’m going insane with the severe head pressure and pain, dissociation (feeling like I’m in a dream, out of touch with reality), and anxiety (feeling like world is about to end). It has been the worst 3 days of my life. When will this end? #LongCovid
‘the authors identified a strong dysregulation of platelet-related genes in ME/CFS patients suggesting that exercise alters platelets in ME/CFS.’ Could this explain PEM symptoms? cell.com/cell-reports-m…
Literally how it feels talking to medical professionals #mecfs #medtwitter
THIS!!! 👇👇👇 I’ve tried just about everything since I got #ME almost 29 years ago. If something was out there for the majority of #pwME, we’d have found it.
Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies: Trends in Molecular Medicine Approximately half of patients with long COVID (LC) fulfil the diagnostic criteria for myalgic encephalomyelitis #MECFS cell.com/trends/molecul…
Finally... our paper on #LongCovid is out! It's based on my tweet here. Thanks to my amazing coauthor @MVGutierrezMD and the amazing @zalaly for your input and encouragement! #MedTwitter #Neurotwitter @Jacobs_Med_UB @AANmember journals.lww.com/ajpmr/citation…
My mecfs doctor says my prognosis is poor. Well I knew that already, four years of illness. I did a standing test today. Went to 130 beats in 3 minutes. My blood pressure spiked. I have hyper adrenergic pots she says.
Chief Medical Officer Dr. Brent Goodman shares why he joined #Metrodora and what’s ahead for the institute. #MedTwitter
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 checkedIt'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]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 adviceJanet Dafoe @JanetDafoe
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...ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.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.GeoCK @GeoEduOne
6K Followers 954 Following MSc | AD | ICL, UCL, UOB alum | Geoscientist, cyclist, adventurer, athlete, dad | Sidelined after a “mild” Covid infection, Dec 2021 | #LongCovid #FBLC #ClimateDan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poetNaomi Harvey PhD #Wea.. @Naomi_D_Harvey
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14K Followers 579 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrsAnil van der Zee © @AnilvanderZee
9K Followers 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissingTess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨Bea is Chronically Pe.. @Be_Kinderr
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10K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.Brian Fog @useless_priest
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6K Followers 3K Following 29y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨Edward Williams @EdwardWill66357
450 Followers 3K Following #Twitter Philanthropist# old account got hacked. Free to DM Me your cash app, PayPal, Venmo or Zelle. God bless!!!Sarah Wilkinson @sarahwilko372
12 Followers 164 Following Honors student Psychological Science@SCU on the Gold CoastLaila 🌻 @lailamourthe
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485 Followers 2K Following been in Portland for awhile. I’m super blue, just like Portlandsingkepe @singkepe
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316 Followers 451 Following Since 2011 LA's Most Reliable Cannabis DeliveryRex McD (now part of .. @rexm123
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35 Followers 339 Following zeitgeist surfing. #LongCovid #FuckCancer Tired and retired. Libraries, cats, peace. Kndness first always.Katherine Gross @Katheri81236702
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2K Followers 6K Following ❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜🤎🖤🩶🤍❤️🩷🧡💛💚💙🩵💜Tara Munson @TaraMunson
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818 Followers 3K FollowingLong Covid Educators .. @LCEducatorsUK
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661 Followers 954 Following British-Australian editor of fiction and creative non-fiction. CIEP, IPEd. (she/her)Hannah Davis @ahandvanish
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27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammationJanet Dafoe @JanetDafoe
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7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founderDr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKEDDysautonomia 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.GeoCK @GeoEduOne
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129 Followers 58 Following M. Sc. Industrial Engineer | Software Developer | Science & Nature Enthusiast 🏄🏼 | ME/CFS 🧬Laila 🌻 @lailamourthe
214 Followers 2K Following Architect / 🏢🔬 . A decade through ME/CFS. #homebound 99% and #bedbound 80%.KCRW @kcrw
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6K Followers 2K Following Internationally recognized online publication. We explore the science that matters to you. Subscribe to The Scientific Observer here: https://t.co/IC7zVmfwrEYann (ME/LC Research .. @yann_mecfs
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36 Followers 19 FollowingRhonda L S. Ovist @notallinhead
67 Followers 123 Following retired Assoc Professor of Sociology, scholar, grass-roots organizer, campaign consultant, advocate of The People, out-spoken chronically ill disabled activistThis is a very common problem in the #LongCovid and #MECFS community.
Everyone just wants to hear “good” news. They don’t want to hear the hellish reality we face. They can’t accept it. And when I’m seen as not having a positive approach, I am told I don’t want to get better
@PhillyPhile215 @thesicktimes @bhanlon15 @loscharlos @dsethlewis @LCMoonshot I'm not aware of any. I think, to write this conclusively, one would need someone from inside Sanders' office to confirm this, which could be tricky from what I know about this type of reporting
@betsyladyzhets @PhillyPhile215 @thesicktimes @bhanlon15 @loscharlos @LCMoonshot I don’t think #PodSaveJon was the impetus for the senate hearing. From what I understand, Bernie et al heard directly from constituents of his with Long COVID and decided to do something
One of the hypotheses for the transition from acute to chronic illness in #MECFS #LongCovid and similar conditions is that the immune system gets 'stuck' ON and all the stuff that goes wrong (downstream) is a consequences of this initial 'block'. Un-blocking it and getting it to…
So excited for what’s ahead for Metrodora under Dr Goodman’s leadership. He spent 20+ yrs at Mayo, yet made the leap to join us to build the best medical center in the country for patients with complex conditions. He’s a pioneer in the space and we’re so lucky to work with him.
Chief Medical Officer Dr. Brent Goodman shares why he joined #Metrodora and what’s ahead for the institute. #MedTwitter
Provider-oriented & patient-accessible! These webinars ( at least 4!) will be led by Dr. Peter Rowe & include a lived experience segment. There will be a capstone webinar made up of a Q & A segment. Please submit questions to: [email protected].
In this #MedEd webinar you will 1) Learn evidence-based options for treating ME/CFS 2) Understand IOM diagnostic criteria/evidence behind criteria 3) Understand clinical presentation, epidemiology, and impact of pediatric ME/CFS 4) Learn evidence-based options for treating ME/CFS
Thurs, May 9th @ 1pm. @MEActMaryland will facilitate a pre-recorded webinar series: "The Pediatric ME (Myalgic Encephalomyelitis) Webinar Series by Dr. Peter Rowe: “Evidence-Based Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS"
@ahandvanish @thesicktimes @bhanlon15 @loscharlos @dsethlewis @LCMoonshot Yeah the way the hearing came up quickly did seem like the digital activism was at play in nudging it forward, even if already being considered. And from there the events folding after (the recent draft Moonshot proposal) seemed to follow.
@bhanlon15 @loscharlos @dsethlewis @betsyladyzhets @thesicktimes @LCMoonshot Thanks. That’s what I remembered. Would be awesome if there were a way to capture the facts/narrative of what was at play (beyond this thread).
Really exciting & so important! So many media outlets & journalists have completely abandoned their duty to report on #LongCovid & hold folks accountable on this issue. Having an entire outlet & team dedicated to this is so huge.. congrats @mileswgriffis & @betsyladyzhets 👏🙏
The Sick Times is excited to announce we have received an award of $250,000 from the biotech giving fund Kanro. This grant will fund our general operations over the next 18 months, enabling our expansion to a larger newsroom. Read more: thesicktimes.org/2024/04/30/pre…
Y’all, I can’t. Mile 9: “my gut hurts so bad!” Mile 15: “I’m cramping so bad.” Literally rolling away in a wheelchair at the end of the marathon. Idk who needs to hear this besides this creator but REST AND STAY HOME WHEN YOU’RE SICK.
« I used to run twice a week, now I need a mobility scooter: The frontline medics who caught coronavirus at work but are now crippled by long Covid and fighting for damages » dailymail.co.uk/health/article…
Really feel like I’m going insane with the severe head pressure and pain, dissociation (feeling like I’m in a dream, out of touch with reality), and anxiety (feeling like world is about to end). It has been the worst 3 days of my life. When will this end? #LongCovid
‘the authors identified a strong dysregulation of platelet-related genes in ME/CFS patients suggesting that exercise alters platelets in ME/CFS.’ Could this explain PEM symptoms? cell.com/cell-reports-m…
Literally how it feels talking to medical professionals #mecfs #medtwitter
THIS!!! 👇👇👇 I’ve tried just about everything since I got #ME almost 29 years ago. If something was out there for the majority of #pwME, we’d have found it.