Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @JeffLubell_C19
I am exploring treatments for my daughter's EDS & ME/CFS & implications for people with #EDS, #MECFS, and #LongCOVID. Not an MD or professional scientist. Joined April 2020-
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📌 Pinned Tweet 2.0 (meant to be shared) #UniteToFight2024 Largest global #LongCovid & #MECFS Conference ✅ Free access ✅ 100% online ✅ Inclusive and interactive 📅 Date: 15th-16th of May 2024 9:00 am-7:15 pm (CEST) More than 35 speakers from all over the world 🌍 More…
#UniteToFight2024 ✅ 5,000 Registrations 🥹 Together we have reached this incredible milestone! Registrations from Canada, USA, Mexico, Australia, UK, Japan, New Zealand, Germany, Finland, Norway, South Africa, France, Turkey, Greece - and many more countries… 16 days to go !…
Speaker recap 🤩 Say hello to @BhupeshPrusty ! 👋 Prof. Bhupesh K Prusty will cover the overlapping and differentiating biological features of #MECFS and #LongCovid in his session at #UniteToFight2024 We are already very excited !
BMJ Rapid Response: Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis #MyalgicEncephalomyelitis bmj.com/content/383/bm…
„Use her name and explain it, tell the world about it…'" We haven't shared the origins of the idea of #UniteToFight, which was inspired by the unfortunate loss of @dutchlauren who suffered from ME/CFS. Out of deep respect for Lauren and her family, we kept it private until…
Unintended Benefit of GLP-1 Treatment for Obesity: Resolution of Chronic Systemic Mastocytosis Symptoms bariatrictimes.com/glp1-resolutio…
People with a connective tissue disorder may be especially vulnerable to the endothelial damage that characterizes long COVID due to the fragility of their vasculature and slow wound healing link.springer.com/content/pdf/10…
Today we need to stand (or sit or lay down in my case) in solidarity with Millie, who is in hospital with very severe M.E.. She is being kept against her will, her M.E. deteriorating every day. Hospitals aren't equipped to deal with severe M.E. #BringMillieHome #DontLetMEDie
“A Potential Mechanism Underlying ME/CFS Development, Aggravation and Comorbidities. Mast cells, present in nearly all human tissues, and eosinophils, found in the gastrointestinal tract, secondary lymphoid tissues, adipose tissue, thymus, mammary gland, and uterus, are…
Super preprint on automated microscopy of #microclots in #LongCOVID by @cazd45 and colleagues: medrxiv.org/content/10.110… #TeamClots
Proud to be raising awareness #hypermobility #LongCovid #neurodivergence with @Ruth5News please check out @SEDSConnective for support and bmjpublichealth.bmj.com/content/2/1/e0… thanks @BSMSMedSchool @KingsCollegeLon
Proud to be raising awareness #hypermobility #LongCovid #neurodivergence with @Ruth5News please check out @SEDSConnective for support and bmjpublichealth.bmj.com/content/2/1/e0… thanks @BSMSMedSchool @KingsCollegeLon
Great #LongCovid study showing a leaky blood brain barrier:
Great #LongCovid study showing a leaky blood brain barrier:
Joint Hypermobility Elevates Long COVID Risk, Says King's College | Mirage News miragenews.com/joint-hypermob…
On #LongCovidAwarenessDay we need much more than just awareness—desperately in need of clinical trials to test and validate effective treatments
On Long Covid Awareness Day, we recognize the millions still living with the disabling effects of COVID-19. I am committed to fighting for the federal funding necessary to better diagnose, treat, and support them.
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
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
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Karen Lubell @karenlubell
3K Followers 2K Following ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
Prof Doug Kell CBE #F.. @dbkell
14K Followers 10K Following Liv Uni. ENTJ. CBE. Against brexit and Govt lies. #FBPE https://t.co/Z2XFPIxkfi https://t.co/F5o0wIMw1H. Nothing I say is medical advice @[email protected]
Pam Bishop, PhD @pamelarbishop
10K Followers 3K Following Was research professor, now disabled by #LongCOVID (12/5/20) & subsequent #POTS #MECFS #MCAS #SFN #cSVD Patient advocate when able. Tell your story if you can.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Lizzy H @hopefullizzy
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✨
Harriet Carroll: Long.. @angryhacademic
8K Followers 4K Following #LongCovid Scientific Consultant Hon Research Fellow, Lund Uni PhD Nutrition & Metabolism Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Renuka Dhinakaran @renudhinakaran
6K Followers 602 Following International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia Focusing on marriage, parenting & chronic illness
Shosha Capps 😷🎨.. @shoshacapps
280 Followers 3K Following Appalachian expat academic adjacent #environmentaljustice #disabilityjustice #COVIDisNotOver Caregiver to twin toddlers and/with #PwME
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
UniteToFight2024 @U2Fight_World
3K Followers 121 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.
ɸ @paidrantsofflin
2 Followers 437 Following
Mojoroxy 💛🦋#lon.. @roxy_mojo
13K Followers 14K Following Blessed Be 🌕#longcovid since 3/2020 #MECFS #4yearsurvivors
Bobbi Jo Green @BobbiJoGreen2
88 Followers 240 Following Women’s heart health advocate/patient. Life long learner. Mom. ♥️
Sarah Oistad @sarahoistad
480 Followers 3K Following
🍁Doug Snedden @dougsnedden
1 Followers 5K Following "When you give from the heart your gift becomes love." 🦠 🤧 🤢 📈 💊 💉 ☣ 🚑 🌍𝐏𝐚𝐧𝐝𝐞𝐦𝐢𝐜 𝐄𝐦𝐞𝐫𝐠𝐞𝐧𝐜𝐲 𝐀𝐥𝐞𝐫𝐭!🌐 🗣 💬 🗯 💭 🚐 ⏳ 🧪 🧬 ☠
Jordan Kasa @JordKasa
29 Followers 5K Following
Klara Landford @KlaraLandf38777
87 Followers 5K Following
Jessy Utt @JessyUtt85082
82 Followers 5K Following
Kate Colbert -- Highe.. @KateColbert
478 Followers 669 Following Brand marketing expert, communications coach, speaker, researcher, and author of the acclaimed books "Commencement" and “Think Like a Marketer."
Sofia @sofiahearty
304 Followers 405 Following “When the going gets tough, put one foot in front of the other and just keep going. Don’t give up.”
Tiffany Dages @TiffanyDages
986 Followers 4K Following Lifelong vEDS warrior🦓 7th gen Floridian 🍊mom 💐hospice volunteer🤗 Dem💙
Mary Vandehey @racn4life
212 Followers 986 Following I'm just me. Mom to two amazing son's. O'Ma to their three beautiful pups. Sow seeds of joy, kindness, peace, love and hope.
Gabi Hartai Molnar @GabiHartaiM
67 Followers 329 Following What's past is history, sth to be learned from and not changed.
Rita Bippus @RitBippus
38 Followers 5K Following
Brutus Berserk @BrutusBerserk
299 Followers 3K Following
Lyla-rose Zimlich @LylaZimlic13567
69 Followers 5K Following
Paul Riddle @ridd_pa
72 Followers 5K Following
Zoi Dewinne @ZDewinne28205
83 Followers 5K Following
Dr Nicola Clague-Bake.. @ClagueNjc36
4K Followers 2K Following Physio @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/fatigue/healthy lifestyles/mental health/ME/Longcovid/EDI/all views my own she/her
Rete Long Covid Press @ReteLongCovid
150 Followers 1K Following Benvenuti nella Rete Long Covid Italia 💙 https://t.co/T6NThQfoQL
Kate @KateHopeOliver
0 Followers 3K Following
Chronic Fatigue Syndr.. @FatigueMe92484
246 Followers 468 Following Education in how biological pathways are affected by environment, culture and genetics and health media. Science blogger in environmental illness for 16 years.
EPIPOLE of Phoenix @EpipoleofPHX
1K Followers 3K Following WRITER, DISABLED, PRO-CHOICE, PRO-WOMAN, FEMINIST, ANTI-EPIDURAL,ANTI-ESI,NOZEMPIC(CSF leak, HT, migraines,EBV, spinal lipoma & BPD)LET’S GET WOMEN TALKING!
Kyle Bradley 🍄 @aneem_indigo
636 Followers 2K Following I’m a professional vendor of Psychedelics products, also a psychotherapist been working with many people suffering from anxiety,depression,PTSD, pain and more.
Lacey-mae Southmayd @SouthmaLacey
14 Followers 2K Following Lacey-mae | 19 | Earn now with crypto presale👇🔑
Neuroimmune Scout @neuroimm_scout
11 Followers 62 Following
Steven Felix @StevenF18608041
24 Followers 67 Following International Politics/ Senior Advisor/ lobbyist/ Public Relation/ New Tech Projects/ the Grand Preceptor of Xia Dynasty
DysautonomiaME @DysautonomiaME
82 Followers 447 Following Dysautonomia for decades #PoTS #MCAS #hEDS
ellie_danlos @ellie_danlos
1 Followers 46 Following professional rubber band. i blog about hypermobile ehlers-danlos, medical gaslighting, and structural issues within the u.s. healthcare system
BendyBrain: Dr Jessic.. @BendyBrain
8K Followers 2K Following hypermobility (and related conditions) brain-body neuro research @bsmsmedschool | Dr Jessica Eccles | https://t.co/HayQnrkpZk | views own | patron @sedsconnective
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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
It'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 advice
Shaney Wright @ShaneyWright
15K Followers 493 Following @WestHam Fan ⚒ | Accidental Centrist; Pro-Pragmatism/Science; Anti-Dogma. Fighting for Biomedical Research into, and Awareness of, #LongCovid. #FBLC
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.
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 725 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
Prof. Akiko Iwasaki @VirusesImmunity
220K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII President of @ImmunologyAAI
Dr. Alice 💕 @calirunnerdoc
26K Followers 1K Following Cardiologist,Advocate,🏃🏼♀️,✍🏻,Posts≠medical advice. NO DMs for med advice,SARS-CoV-2=persistent vascular bomb💣.Views expressed are my own,not my employers.
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
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
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Janet 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...
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Dr 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 BLOCKED
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
Jennifer Senior @JenSeniorNY
47K Followers 2K Following Currently: Staff writer @theatlantic. Formerly: Columnist @nytopinion; daily book critic @nytimes. Author of All Joy and No Fun and On Grief. Wife, mom, etc.
Dr. Abby Koppes @ANKoppes
2K Followers 3K Following Assoc Prof @NU_ChemE, NeuroEngr, Gut Stuff, Dog Lover, She/Her. Serving @bmesdiversity #MaskUp #LongCovid #POTS #BLM. Views My Own @[email protected]
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]
Bobbi Jo Green @BobbiJoGreen2
88 Followers 240 Following Women’s heart health advocate/patient. Life long learner. Mom. ♥️
Ror Preston @RorPreston
2K Followers 555 Following Lead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | #MECFS since 2018 | Own Opinions
Jo @SEPfieldPatient
607 Followers 1K Following
Amanda Kvalsvig @AmandaKvalsvig
5K Followers 914 Following Epidemiologist in the Department of Public Health, University of Otago Wellington @OtagoWellington Aotearoa New Zealand, all views my own, she/her.
Frau𝕏ausNRW @FrauXausNRW
2K Followers 2K Following MomOf2 mit #LongCovid #MECFS #POTS #SFN - Werde 2024 (vielleicht) gesund ! #UniteToFight2024
UniteToFight2024 @U2Fight_World
3K Followers 121 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.
Rob Wüst @RobWust
6K Followers 771 Following Assistant-Professor Muscle Metabolism at Vrije University Amsterdam, Netherlands. Interested in skeletal muscle function in health and disease
Stephen Griffin @SGriffin_Lab
28K Followers 10K Following Professor of Cancer Virology | Viroporins, Antivirals, Viral Oncology, Immunotherapy | Own views | @IndependentSAGE @LongCovidKids @projecthalo #VaccinesPlus
Prognostic Chats @PrognosticChats
9K Followers 222 Following NHS Consultant doctor 🩺 Navigating #Covid & sharing the published studies so you can navigate as best you can too #LongCovid & frontline updates
Dr. David Ludwig @davidludwigmd
42K Followers 157 Following Endocrinologist, Nutrition Researcher, Public Health Advocate. #1 NYT bestselling author of Always Hungry? and cookbook Always Delicious.
ME Action Now @MEActNOW
3K Followers 5K Following https://t.co/Vyrf7yGws7 🌱#Vegan 💙Photography💙Birds💙Animals 🌱Gardening 💙#MECFS LongCovid #POTS #MCAS💙BLM💙Resist💙Equal rights💙Gun Control IFollow
Prof Jeffrey S Morris @jsm2334
12K Followers 2K Following George S. Pepper Professor of Public Health & Preventive Medicine; Biostats, Stats & Data Science, UPenn; lifelong learner & truth seeker; Views my own
Julia MV @julialmv
2K Followers 404 Following Let's increase health equity Now: @AllofUsResearch at @ScrippsRTI & #LongCovid patient-researcher @patientled Then: @RockefellerUniv & @nygenome
Scripps Research Tran.. @ScrippsRTI
4K Followers 437 Following The Scripps Research Translational Institute's mission is to change medicine, making it more individualized and democratized.
Susan Kandarian @susan_mecfs
1K Followers 813 Following Professor-scientist (muscle biology) on LTD from progressive #MECFS. Ally for ppl with infection-associated chronic conditions. #longcovid 🏳️🌈
Başar SARIKAYA @basarsarikayamd
3K Followers 1K Following Associate Professor of Neuroradiology, University of Washington, PGY-24, G93.32
Shematologist, MD @acweyand
84K Followers 6K Following Peds hematologist oncologist,mother, dreamer, pacifist, justice seeker.Clueless Mother https://t.co/HblMm3s8OM Cream Influencer #CakeForBreakfast https://t.co/4SLDqCFsMq
Dalia Hasan @DaliaHasanMD
18K Followers 5K Following Incoming Family Medicine Resident Physician @thenosm 🩺 MSc in Health Promotion @westernu 😷 Founder of @C19TestFinders 🧪 Proud Mother & Wife 👨👩👧👦
Michael Osterholm @mtosterholm
72K Followers 186 Following Director @CIDRAP New episodes of our podcast on COVID-19 and the latest infectious disease threats: https://t.co/G38qUVJnHz
Sharon Cohen @SharonC97936831
813 Followers 4K Following #TwitterHaiku; Tulane MBA; LSE; Univ of Wisc Mad; former career financial services; international bus. #chronicillness; #physicaldisability.. 4 NIH studies
Isabel Ramirez-Burnet.. @IsabelRamirezRD
3K Followers 1K Following NBC-HWC CEO @renegaderes & Todologa @remissionbiome patient-led, decentralized, human-centered research. #MECFS #longcovid #postinfectious #chronicillness
KC Martin-Stone @KCMartinStone
2K Followers 5K Following Archaeologist. Comedian. Occasionally competent MF. Leaky bag of brain juice. GoFundMe for medical / survival. She/her
Louise Zylan @loueyZee
305 Followers 914 Following PhD Student | Nutritionist | Lecturer | Clinical Supervisor | All things Nutrition: Biochemistry to Public Health | Disability & Health | Equity |Health for all
4IRishere @mbeilste
231 Followers 752 Following
Melissa Halvorson Smi.. @nsjs1234
8K Followers 4K Following Wife, daughter, mother, physician. U of MI fan. From North Dakota. Former director of a Women’s Health Center. Now disabled due to Pfizer Covid Vax.
Snir Levi @snirlevi
442 Followers 4K Following Strategy and Research Analyst researching how new media impact grassroots culture, social change. @LSESociology @USCAnnenberg #PwME #digitalhealth
Scott Daniska @scott_scientist
243 Followers 212 Following Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together! #ChronicIllnessAwareness
Rebecca Ryan @DrRebeccaRyan
1K Followers 1K Following Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS and hEDS.
StevenJSmithMD3 @j_md338936
42 Followers 232 Following
Dr. Tara C. Dennehy �.. @taracdennehy
2K Followers 2K Following Relapsing polychondritis patient educator + advocate | former postdoc on disability | 🐕🦺 @BeaconBCSD’s human | 24/7 NIPPV user 🫁 | ♿️ | 🏳️🌈 | she/they
Hiroshi Yasuda (保�.. @Yash25571056
35K Followers 592 Following Scientist & Professor (科学者&教授). Tweet is a soliloquy based on my personal views (ツィートは個人の見解に基づく独り言です).
Angela M. Cheung @AngelaMCheung
4K Followers 1K Following Christian Internal Med Specialist / Senior Scientist @UHN, Prof of Med @UofTmedicine, Ho Chair @UofT_IM, @CRC_CRC in MSK & Postmenopausal Health. Views my own.
Hazie Thompson @haziethompson
6K Followers 2K Following Long Covid/ME 2020, Mitigation Advocate, Founder @BIRcovidhealth
Tara Foti, PhD MPH @TaraFotiPhD
813 Followers 772 Following Perinatal health researcher, Adjunct @usfcoph | Former @kpdor Postdoc, @usfcoph PhD, @URMC MPH | Now #disabled #LongCovid #PostVax #MECFS @RemissionBiome #R50
Harriet Carroll: Long.. @angryhacademic
8K Followers 4K Following #LongCovid Scientific Consultant Hon Research Fellow, Lund Uni PhD Nutrition & Metabolism Tweets: nutrition▪health▪all-things-science▪activism▪#TeamClots
Jesus Castro, Ph.D. @JCastro_Marrero
990 Followers 1K Following PhD senior researcher in the Rheumatology Division (Research Unit in ME/CFS and Long COVID) @VHIR_ at Vall d'Hebron University Hospital Campus @vallhebron
Dr. Lucky Tran @luckytran
70K Followers 4K Following 📢 Public Health, Climate Justice, and Science Communication 🎓 Columbia, Cornell, Cambridge, Adelaide ➡️ Find me on other websites: https://t.co/yvBIYKMcGF
Lara Stanić @StanicMd
656 Followers 352 Following M.D., ENT specialist, IBCFPRS, LongCovid/ME/CFS patient. Hoping to get rid of the last abbreviation
Meiners PT, PhD @KellyMMeiners
681 Followers 638 Following *Physical Therapist, Athletic Trainer, CSCS, dedicated runner and mom. *disabled since 10/2021. Advocate for #LongCOVID, #POTS, #MECFS as able.
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Dr Mary Pearson @drmejpearson
2K Followers 1K Following Researcher | Place, memory, land, photography | Volcanoes & fragile landscapes | Working in college & university pastoral support & care | Views my own
Carly Urban @carly_urban
3K Followers 1K Following Econ Prof at Montana State Univ, Research Fellow @iza_bonn, interested in household financial well-being, lover of mountain adventures
ME/CFS Research Found.. @MECFSResearch
1K Followers 226 Following Für mehr biomedizinische ME/CFS Forschung. Foundation for biomedical research on #MECFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).
Carmen Scheibenbogen @C_Scheibenbogen
12K Followers 62 Following Immunologist and ME/CFS researcher MD @ChariteBerlin
Patti DeMuri @PDeMuri
1K Followers 5K Following Rare Disease Patient Advocate - helping rare disease patients navigate the medical system and work with their doctors to get the care they need.
Sydney 😷 @Syd_Klug
2K Followers 5K Following in a continuous attempt to be someone who lives and dies giving a damn |opinions=mine|
I have no affiliation but I recently saw a LC / ME/CFS patient saying they had a big response to the medical probiotic VSL#3 We know about gut dysbiosis in this disease, and this product is a medical supplement with high potency for treating IBS (which is an autoimmune disease)
You’ve got 90 free minutes in NYC. Do you visit the Guggenheim or the @metmuseum, and why?
Please note: Apart from #MECFS and #LongCOVID, Post-exertional malaise can be found in cancer-related fatigue, gulf war illness syndrome, Post-treatment Lyme disease syndrome and possibly other syndromes. We need to further investigate this key symptom and common mechanisms.
@JeffLubell_C19 Hey Jeff, can you please contact me. It's regarding the UniteToFight conference. Thank you.
Interesting #MECFS study! Reduced cerebral blood flow after head-up tilt was associated with poor cogn. function - which was fixed by phenylephrine pubmed.ncbi.nlm.nih.gov/38682242/ Here, the finding of reduced catechol levels in the #MECFS brain (Wallitt et al) comes to mind, doesn´t it?
@ahandvanish IV magnesium (1gm mag sulfate) in normal saline (helps my migraines which is all part of the crash)
I was made to feel like a liability that could not be accommodated in my residency rather than an asset for my knowledge combined with lived experience. Medicine will not be an equal opportunity space until every doctor has an opportunity to train and participate fully.
Powerful closing remarks by @PetePoullos. Thank you to @StanfordMedADIE and all the incredible speakers for an amazing #SMADIE2024 conference!
16 days to go until #UniteToFight2024 ! A large and diverse audience is the key to long-term success ! Sunday is the re-tweet day 🚀 Can everybody re-tweet the original tweet today ? 🤔
📌 Pinned Tweet 2.0 (meant to be shared) #UniteToFight2024 Largest global #LongCovid & #MECFS Conference ✅ Free access ✅ 100% online ✅ Inclusive and interactive 📅 Date: 15th-16th of May 2024 9:00 am-7:15 pm (CEST) More than 35 speakers from all over the world 🌍 More…
My physical pain is increasing. My body either feels hot or cold. Small noises are so loud, lights are so bright. I can’t make decisions and often can’t communicate my needs. I think about death a lot (again). I am afraid.
I am declining. A couple of weeks ago, I thought I had found a good routine. Now I am crashing from short conversations and new TV shows. I constantly feel a nauseous tingle in my throat - a sign of a crash to come. I run out of brain energy after a couple hours of being awake.
I’ve recovered enough to sit up for a few hours with my babies! MRI tomorrow
What kind of IVs do you all ask for when you really need to alleviate a crash? Nothing risky #LongCovid #pwme
@ahandvanish 50mg Bendaryl - slow pushed over 4 hours. Comes in a bag of saline. Gives me a feeling of my brain deflating every single time. I get them weekly but in a crash it really rights the ship quickly.
#UniteToFight2024 ✅ 5,000 Registrations 🥹 Together we have reached this incredible milestone! Registrations from Canada, USA, Mexico, Australia, UK, Japan, New Zealand, Germany, Finland, Norway, South Africa, France, Turkey, Greece - and many more countries… 16 days to go !…
🧵I’ve been covid cautious for 5 years now (2 yrs of which I’ve had Long Covid). I don’t know anyone else my age in the UK who is Covid cautious & people always just assume ‘my mum is making me’ but I do this for myself and for others. It’s my choice and it’s a good choice.
After 38 yrs of RRMS (Relapsing Remitting) I've transitioned to SPMS (SecondaryProgressive.) I knew it was coming. No new lesions; lots of worsening symptoms. But to hear the words after almost 4 decades was tough. I'm still me despite a label. Life goes on 🧡 #multiplesclerosis
One of those magical moments again—she is playing the piano 🙏🏻. But there's one thing: it’s 1:30 AM here. I hope our neighbors don’t call the police for the noise 🤣. By the way, this is Buddy showing his nose ☺️. #LongCovidKids
I love David Putrino! ❤️
If you’ve been following me for a couple of weeks, you will know that I have cytokine preference in and around my Achilles. Despite my attempts to fix it and the incredible advice from the #LongCovid community, gently coaching me through screaming “STOP” at my foot, increasing 1/
Speaker recap 📣 This is Martin Kräter ! @KraterMartin At #UniteToFight2024, Martin will speak about the Deformability Cytometry, from bench to bedside We are looking forward. 👍
Speaker recap 📣 Here is Dr. Rob Wüst ! @RobWust At #UniteToFight2024, Rob will speak about the skeletal muscle function and post-exertional malaise (#PEM) in patients with #LongCovid. That sounds pretty interesting !
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