Open Medicine Foundation @OpenMedF
OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases. omf.ngo California, USA Joined December 2012-
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OMF’s large-scale biomarker project, BioQuest, is working to incorporate subtype identification into its study. Read more about the project on our website: omf.ngo/bioquest-large…. #MECFS
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As ME/CFS is a heterogeneous disease, it’s likely that there are subtypes of the disease to identify. Subtyping might be particularly important for helping guide treatments.
🧬Science Wednesdays: Subtyping Subtyping is the act of identifying smaller groups within a larger group of people. In the context of disease, subtypes are typically variations of the larger disease (e.g., HER2+ breast cancer is a subtype of breast cancer).
As May Momentum comes to a close, we want to leave you with a taste of why our researchers do what they do. Watch the full conversation here: youtu.be/FPhECAf7gz0
Today at the Invest in ME Conference, Dr. Maureen Hanson — member of OMF's Scientific Advisory Board — presented "Searching for Chronic Infection in ME." Thank you, Dr. Hanson, for the research that moves us closer to answers for the millions living with ME/CFS.
Read more about the trial on our website: omf.ngo/the-life-impro….
OMF’s clinical trial, the Life Improvement Trial (LIFT), is investigating two drugs:pyridostigmine and low-dose naltrexone. Pyridostigmine has been used off-label to manage dysautonomia, so the LIFT may, in part, help to address dysautonomia in ME/CFS.
🧬Science Wednesdays: Autonomic nervous system The autonomic nervous system controls involuntary actions in the body like heart rate, blood pressure, digestion, and more.
Open Medicine Foundation retweeted
We are excited to be going to the Invest In ME conference outside of Cambridge England again this year. Ron Davis and Rob Phair, are both going to be speakers. I will be doing my usual schmoozing around with all the researchers!
OMF’s Melbourne ME/CFS Collaboration has made strides toward developing a diagnostic algorithm for ME/CFS. Read more about it, including the sensitivity and specificity of the algorithm in the paper: nature.com/articles/s4385….
In ME/CFS research, sensitivity and specificity particularly come into play when trying to develop a diagnostic tool. Currently, there is no objective way to diagnose ME/CFS, so a diagnostic tool that is both sensitive and specific is crucial.
🧬Science Wednesdays: Sensitivity vs specificity Sensitivity and specificity are terms that describe how good something is at correctly identifying a condition (e.g., people within a population that have a disease).
Linda Tannenbaum, Founder and CEO of OMF, will deliver the inaugural lecture of Faculty of Medicine of the University of Lisbon’s new Open Lectures series on May 25.
One day left to take the CTN Lite survey. We know energy is precious. If you have a few minutes to share your perspective, it goes straight to the researchers working on what comes next. Closes tomorrow: forms.gle/1RAx657KFx9Hoa…
Open Medicine Foundation aims to break the traditional mould and remove research silos via our Collaborative Approach to Systems Research model, bringing together different areas of expertise to create a more holistic approach.
Impact on Approaching Research Traditionally, medical care systems and research institutes are set up to study, understand, and treat diseases via specific, singular systems. This approach is not sufficient for addressing a multi-system chronic complex disease, however.
🧬 Science Wednesdays: Multi-system chronic complex disease What is a multi-system chronic complex disease? While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down.
Janet Dafoe @JanetDafoe
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Tom Kindlon @TomKindlon
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Whitney Dafoe @DafoeWhitney
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Christoph Ströck @cstroeckw
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Sten Helmfrid 🇺�... @StenHelmfrid
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Dan Wyke 🦠➡️�... @Dan_Wyke
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S Blitshteyn MD, FAAN... @dysclinic
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Adam @ABrokenBattery
8K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Dr Asad Khan FRCP FRA... @doctorasadkhan
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Lizzy H @hopefullizzy
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Tess Falor, Ph.D. | R... @tessfalor
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31 Followers 143 Following Long Covid since 2024. Trying to find my way back to some semblance of a life.
Sue Bergevin @Sue228888
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Wayside Scribbles @waysidescribble
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Danilo45 @Danilo451283748
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ousman @ousman8mbl9
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Felicia @John85969122527
104 Followers 766 Following Felicia✨ kind heart. Good vibes. Living life peacefully ❤️
Marcus Morgan-Valenti... @Totalblessings
533 Followers 4K Following A disabled ND Specialist/EDIA & L&D Practice Development Consultant Hidden Disabilities Change Advocate/Snr Executive Coach/Events Speaker/MH First Aider-MHFA🏅
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ekorry @LaineyK83
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Miss P with ME @Miss_P_with_ME
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MadMouse 🦼🌈 @madmouse42
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A @A8609568118533
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Zev @Dysaut0nomia
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Kelly Edwards @KellyYayalldayy
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Charles W | Protect t... @waltz_tales
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Swann Collin @Vampa_L96
0 Followers 13 Following
Tori Akhimien @ToriAkhimien1
7 Followers 29 Following Explorer of faith , knowledge and learning how not to mess up in life . Everyone is connected however diverse we may seem . Make a ripple in the lake, impact.
Tim Marvin @TimTkneet
151 Followers 967 Following blessed husband, blessed father, blessed grandpa, thankful.
Fred Rossi @darthfoo
332 Followers 2K Following My passions: Lightsabers, killer apps, books, comics, & Penguins goals! 🚨 My uninvited sidekick #LongCovid #MECFS #PwME. Still peak nerd! #LetsGoPens
slicedlime 💙💛 @slicedlime
79K Followers 503 Following Technical Director, @Minecraft Java Core at @Mojang. Twitch Partner. YouTuber w 100k subs. Previously: Dev on Battlefields, Mirror's Edge Catalyst, Budget Cuts
Elyse Bart @ecbpoohxx79
425 Followers 2K Following I love Jensen Ackles, spn, Lucifer, Dr. who, the boys, gen v. I love animals too. I met my bestie on here, so grateful for that!!
Recovery Man🇺🇸�... @CaringThinkr
5K Followers 6K Following Linguist. Interested in most everything that deeply affects living beings, plus sports. Lifelong learner. Recovering from Long COVID. Also have ADHD, etc.etc.
marianlozano@hotmail.... @LadyMarianLL
0 Followers 30 Following
Rowena Ivers @RowenaIvers
212 Followers 496 Following Prof, Graduate School of Medicine, UOW, GP and public health researcher aiming to improve the health of all. Views my own.
Stephanie Flournoy Mc... @StephanieF81122
4 Followers 158 Following
Tom McMurtry @TomMcMurtryNZ
359 Followers 237 Following Life. Love science, nature, tech, & good faith attempts to change the world for the better. Have had ME/CFS since early 2020 from a mystery virus. Wish to heal.
Tzed @Tzedioep
3 Followers 396 Following
(((B.Tomm-Bub))) @BukTomBloch
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Hillviolence @Hillviolence1
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B T @BT9592462511298
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Barbara Marshall @BarbaraM78404
0 Followers 12 Following
Janet Dafoe @JanetDafoe
17K Followers 223 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...
Bhupesh K Prusty @BhupeshPrusty
16K Followers 65 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
56K Followers 4K Following Research, algorithmic music, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
ME/CFS News @MECFSNews
14K Followers 676 Following I used to post news and interesting information on ME/CFS but have retired to focus on other things.
Tom Kindlon @TomKindlon
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Whitney Dafoe @DafoeWhitney
12K Followers 86 Following Severe ME/CFS patient and advocate. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ Useful info for ME/CFS and Long Covid patients in bio link.
Christoph Ströck @cstroeckw
9K Followers 761 Following Soon, people will look back in disbelief at what happened to patients with ME/CFS | Co-founder @weandmecfs | Godspeed 🙇🏼
Anil van der Zee © @AnilvanderZee
10K Followers 892 Following Former professional ballet dancer | Bed- and wheelchair bound M.E. patient | Using ✖️ to raise awareness for #pwME | #IACI #art2cureME #pwme #millionsmissing
Sten Helmfrid 🇺�... @StenHelmfrid
8K Followers 189 Following Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Dan Wyke 🦠➡️�... @Dan_Wyke
14K Followers 6K Following M.E. inactivist; person-centred counsellor (currently not practicing); recovering poet (Rack & Waterloo Press)
Resia Pretorius @resiapretorius
29K Followers 266 Following Vice-Dean: Research and Postgraduate Students, Faculty of Science, Stellenbosch Univ; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
S Blitshteyn MD, FAAN... @dysclinic
23K Followers 2K Following Neurologist/Researcher, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic. Tweets🚫med advice. Opinions my own.
davidtuller @davidtuller1
11K 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.
Putrino Lab @PutrinoLab
36K Followers 406 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Dr Asad Khan FRCP FRA... @doctorasadkhan
27K Followers 4K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine ONLY POSTING ON UPSCROLLED NOW
Naomi Harvey “PhD W... @Naomi_D_Harvey
17K Followers 4K Following Zoologist. She/her. ME/CFS since 2002, now Severe. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Dysautonomia Intl. @Dysautonomia
26K Followers 353 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.
Billy Hanlon @bhanlon15
14K Followers 14K Following ME/CFS | Long COVID | IACC | https://t.co/Qitpgq8anF | Stand with Minnesota
#MEAction Network @MEActNet
19K Followers 2K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Vumedi Adult & Family... @AFM_Vumedi
39 Followers 93 Following Vumedi is the leading digital education platform for doctors. Share your work, build your portfolio, and access unbiased clinical education.
Royal Hansen @royalhansen
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Gunnar Gottschalk @ggottschalkPhD
835 Followers 433 Following PI and CEO of Simmaron Research Inc. @redefiningMECFS….social media novice but it’s me.
ME/CFS San Diego @MECFSSD
331 Followers 103 Following ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome
Scripps Research @scrippsresearch
283K Followers 560 Following Scripps Research is one of the world's largest, private, non-profit biomedical research organizations. We are Science Changing Life.
joely @joely
813 Followers 2K Following
ME Research and Clini... @MECFS_Clinic
19 Followers 54 Following Medical clinic offering consultation services and facilities for trials in ME/CFS, Long Covid, and their common comorbid illnesses.
Visible @visible_health
6K Followers 124 Following Making the invisible, Visible. Wearable technology for illness, not fitness. Join now 👇
Tobias @992tobias
4K Followers 86 Following MECFS 2010 - I don’t belong to the scars that they left on my soul
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238 Followers 711 Following twitter sceptic and mommy of franny and Annabel
Makayla @makaylamarie_7
126 Followers 367 Following
Dominic with ME/CFS @dog178234
321 Followers 736 Following
Rebecca Morse @RebeccaMor85583
1 Followers 11 Following
Christophe Veltsos @DrInfoSec
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marisa 💜 @lcwithme
1K Followers 353 Following 24. Creator, Dancer, Artist. #LongCovid since Jan 2022
Victoire Baillet @VictoireBaillet
273 Followers 1K Following on hiatus #MECFS | #genomes, #epigenomes and complex traits @institutpasteur
John Rood @johnrood
399 Followers 655 Following Writing the book (a book?) on what exited entrepreneurs do with the rest of their lives. (Also, AI compliance).
Alison Reynolds Ball @Alison4Ball
960 Followers 1K Following A regular gal with a quirky background. MAHA and a Biker's wife
Public Health Action ... @pubhealthaction
777 Followers 605 Following Our mission is reducing airborne disease transmission with technology that protects people, advocacy that informs people, and community that supports people.
Sissel Sunde 🇳🇴 @Sissel777
1K Followers 665 Following I got a virus and never recovered (2015). ME/CFS Advocate, Leader of MillionsMissing Stavanger. Former PA/Sr. Business Administrator.
Renegade Research @RenegadeRes
3K Followers 3K Following Patient-led 501(c)(3) nonprofit working on #MECFS & #LongCovid💙 Runs project @remissionbiome • https://t.co/W0iQqqSYY2
Jessika Fernström @jessikafe
214 Followers 397 Following Leader in marketing and business development interupted by ME/CFS. Dedicated to spread knowledge about ME/CFS and any related illnessses/situations.
Mikko Ahtiainen @MikkoAhtiainen
529 Followers 2K Following Partner and CTO at HyperIn Inc., opinions my own.
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9K Followers 8K Following Watch “The Truman Show” to gain perspective on the United States in the age of social media
Frank @_real_frank
1K Followers 592 Following Former |👨🏼🔬natural scientist | ⛈ climate & weather | 📷 photographer | 🏔 outdoor enthusiast | 🌍 planetary health advocate
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47 Followers 308 Following
Marco @Gmwetz
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Someone @HonkyBonky
122 Followers 187 Following
K @LongCovid_Me
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Karolina @Karolina7766
161 Followers 473 Following
Elisabeth Klaar @lammas_leaves
2K Followers 6K Following Marketing for SMEs and NGOs. Mentoring & Tuition: WordPress, Marketing. Also @chronicliving1 - project built with WordPress
NickyProctor @NickyProctor
2K Followers 5K Following Writing up my #PhD a realist evaluation of coach learning & development programme @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
Efthymios Kalafatis @lifeanalytics
5K Followers 3K Following Data Scientist, Patent owner of Artificial Intelligence-assisted methodology for Medical Discovery. Tweets are mine/not medical advice or endorsements.
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Manuel Ruiz @manruipa
5K Followers 197 Following 🔬Diving deep into #MECFS, #LongCOVID, #LongEBV & post-vaccine syndrome research. Dual role:Researcher and EBV ME/CFS patient. Seeking answers. #Antivirals #HLA
Laura vs M.E. 🏳️... @LauraCayuela7
666 Followers 365 Following Paciente de #EncefalomielitisMialgica. Luchando desde mi cama por nuestros derechos 🛌🏻📢 Investigación, formación y reconocimiento
Julie Sullivan @CureLongCovid
6K Followers 4K Following Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate (she/her) 💕
Stacey Paused due to ... @stacey_J_harris
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Christin Chong, PhD @Christintweets
1K Followers 1K Following Your Cheerleader and #1 Fan 📣 Neuroscience PhD 🧠 Buddhist interfaith chaplain ☸
cryptoreuMD.eth/3972.... @cryptoreumd
2K Followers 3K Following Soy parte de un sueño, uno muy raro y salvaje @Quertzalberin DrugDev, #DeSci Acc/ DeGen PHDegen #Chaotic #UNICORN #QUERTZ
Meighan Stone @meighanstone
7K Followers 4K Following Human rights at home & abroad ♿ Executive Director @LCCampaign. Past: President @MalalaFund, Senior Fellow @CFR_org, Fellow @Kennedy_School, @WFP & @ONECampaign
Fran Haddock @franhaddock_
974 Followers 458 Following Spoonie 🥄 Activist ✊ Vet 🩺 (she/her) Currently bedbound with severe ME + Long Covid (more active on IG)
Neurologist Mom @NeurologistMom
10K Followers 287 Following A neurologist, M.D., mother of a 18-year-old with #Lupus #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
ME Research UK - Rese... @MEresearchzone
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John Oliver @iamjohnoliver
4.9M Followers 142 Following Comedian. @LastWeekTonight, @TheDailyShow, The Bugle Podcast (@hellobuglers)
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