Mauled By Traitors @iatrogenicfraud
#MyalgicE #POTS #LymeDisease circa '91. Housebound since '95 😱. Severe hypoperfusion Brain injury (SPECT scan). Abused by NHS when bedridden with ME on wards. youtube.com/@mauledbytrait… UK Joined May 2021-
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'Microvascular Capillary and Precapillary Cardiovascular Disturbances Strongly Interact to Severely Affect Tissue Perfusion and Mitochondrial Function in ME/CFS Evolving from the Post COVID-19 Syndrome'. Source: dx.doi.org/10.3390/medici…
'Epigenetic reprograming in myalgic encephalomyelitis/chronic fatigue syndrome: A narrative of latent viruses'. Source: onlinelibrary.wiley.com/doi/10.1111/jo…
'Phenylephrine Alters Phase Synchronization between Cerebral Blood Velocity and Blood Pressure in Chronic Fatigue Syndrome with Orthostatic Intolerance'. Source: journals.physiology.org/doi/abs/10.115…
'Identification and characterization of endogenous retroviruses upon SARS-CoV-2 infection'. Source: frontiersin.org/journals/immun…
'Machine learning algorithms for detection of visuomotor neural control differences in individuals with PASC and ME'. Source: frontiersin.org/articles/10.33…
Short TV clip about a severe ME sufferer, Carla, in a state run (NHS) hospital in England, UK. youtu.be/KfHZVvl1b_Q?fe…
'Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19'. Source: neurology.org/doi/10.1212/NX…
'Cluster analysis of long COVID symptoms for deciphering a syndrome and its long-term consequence'. Source: link.springer.com/article/10.100…
"Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients" mdpi.com/1648-9144/60/1…
PROTEST #SaveCarlasLife #ExposeMENow Carla is extremely ill in West Middlesex Hospital. Doctors are ignoring NICE guidance on severe ME & ignoring her severe POTS You know what to do THURS 18 APRIL 11am-1pm BST EVERYONE ONLINE USE THE HASHTAGS We'll be at the hospital too 1/
Interesting video: 'Immunoadsorption, HELP apheresis for ME/CFS, Long Covid: Patient Interview and Experience'. youtu.be/g6wcWm6PjCw?fe…
'Impaired Hand Grip Strength Correlates with Greater Disability and Symptom Severity in Post-COVID Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'. Source: mdpi.com/2077-0383/13/7…
'The gastrointestinal microbiota in the development of ME/CFS: a critical view and potential perspectives'. Source: frontiersin.org/journals/immun…
'Association of circulating biomarkers with illness severity measures differentiates ME/CFS and post-COVID-19 condition: a prospective pilot cohort study'. Source: …nslational-medicine.biomedcentral.com/articles/10.11…
2017 Video: '10 min NASA lean test' (alternative to TILT testing). youtu.be/h4r5_nevGbY?fe…
'Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI'. Source: amjmed.com/article/S0002-…
Dr Nancy Klimas video 9/4/2024: Virus reactivation testing & treatment. youtu.be/jZqb3Bkj_qg?fe…
Jared Younger (8/4/2024): Why fractalkine is important in chronic pain and fatigue. youtu.be/OlpFPCwAyOc?fe…
'Post-COVID postural orthostatic tachycardia syndrome (POTS): a new phenomenon'. Source: frontiersin.org/journals/neuro…
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
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Paula Knight @Paula_JKnight
6K Followers 4K Following Graphic memoir THE FACTS OF LIFE (2017) Kidlit books x3 author. Disabled. Bedbound 5.5yr v severe #pwME Submerging writer. Total Bedass. Print Disabled she/her
Alisontomyradio @arisonsned
3K Followers 5K Following ME MCAS Lyme.Still with humour.Satire Music.Dream of life without illness. Wanna ride my bike. Cat & Dog Botherer.YP Counsellor retired. Retweet not endorsement
All of them snollygos.. @OnlyEnnui
3K Followers 2K Following @onlyennui.bsky.social Ex philosopher. #MEcfs activist #hEDS. spinal injury, prescribed benzo withdrawal = hell Expect swearing & sarcasm
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✨
Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne
davidtuller @davidtuller1
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.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
PwME 4 bioMEdical res.. @ValeBodi
4K Followers 2K Following Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Phoebe Boag @PhoebsBo
3K Followers 4K Following Life was once Leith, homelessness & a forklift truck. Life is now being chronically ill with ME & writing about it. Autistic. Smorky’s human. She/her.
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
sarah swastrosarah.bs.. @swastrosarah
2K Followers 876 Following speaking up for everyone affected by severe/very severe #ME. My daughter, my only child, died from ME Oct 2021. Inquest opened. Full hearings expected July 2024
Sibylle Dahrendorf �.. @sibylle_berlin
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
Illustrator Interrupt.. @FranceyME
3K Followers 2K Following Illustration career interrupted by #ChronicIllness advocating for #MyalgicEncephalomyelitis #LongCovid #GWI #POTS #EDS @franceyme.bsky.social
Rivka @Rivkatweets
4K Followers 2K Following Activist/Organizer: ChronicIllness, disability, ME/CFS, Lyme, LongCovid, women | Writer: WashPost, MarieClaire, NPR, Ms, Newsweek | Playwright: Many productions
James Foulger @jifoulger
2K Followers 3K Following Engineer and the thing that is broken is ME @[email protected]
ME Foggy Dog 💙 @MEFoggyDog
7K Followers 4K Following Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - https://t.co/TNEwofcNnm
Arwyn Ng @NgArwyn88946
66 Followers 5K Following
Selena Harges @HargesSele
85 Followers 5K Following
Inaaya Ferrao @ina_ferr
75 Followers 5K Following
Breagh Stagowski @BreaghS38175
73 Followers 5K Following
G R A C E 🌸 @withgrace___
91 Followers 292 Following 🥀 severe ME/CFS mama to baby son ❤️ heart full, body broken 🌻 INFJ
Jo Greer @DrJoGreer
885 Followers 2K Following Educational Psychologist. Personal account. All views my own.
Nic Corr 🇬🇧🏴.. @Nic_Corr
467 Followers 393 Following Life in a darkened room is my reality due to Myalgic Encephalomyelitis (ME). I will never stop fighting for equal access to funding & research!
Long Covid Patient Ac.. @LC_UK_Action
4K Followers 2K Following @[email protected] https://t.co/DlgXF9BQSe
Tapanui 'Flu @TapanuiFlu
2K Followers 3K Following Kiwi Nana. Ex social scientist. #MyalgicEncephalomyelitis since 1983 #TapanuiFlu epidemic Hamilton #NZ outbreak. Mostly housebound. On welfare. #LongCovid ally.
HEIKE @HEIKE2018541
154 Followers 3K Following
Renate-new account�.. @Renate834601
95 Followers 442 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
#NotJustFatigue @njfatigue
596 Followers 663 Following We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue
Annabella Liano @LianoAnnab676
90 Followers 5K Following
Lorna Viessman @l_viessm
77 Followers 5K Following
BROCKMAN @BROCKMAN159542
107 Followers 2K Following
MumME @pamrosling
1K Followers 5K Following Mum & carer to severely Covid-vaccine-injured daughter desperate for treatment to get her life back :-( Also passionate about climate and biodiversity crisis.
CleanTheAir @CleanTheAir2024
310 Followers 5K Following
Sacred Fire Circles @CirclesFire
124 Followers 652 Following Connect with World-wide constellations of love - Light your sacred flame at 6pm your time, December 20, 2020. (any safe flame & location) #SacredFireCircles
Katie Turner @Turner12341
142 Followers 413 Following
ME Accountability @No_ME_Denialism
57 Followers 269 Following Working to dispel myths & refute lies about Myalgic Encephalomyelitis. No harassment, doxxing, stalking, or threats. Don't care about your politics.
Andrea Fighting for #.. @MECFSNanoneedle
944 Followers 3K Following Severe #MECFS Patient Bedridden. No energy to speak. #MECFSBiomarkers #FckTheNIH she/her I am #MECFS Diagnostic Biomarkers' biggest fan!
Mindy Kitei: journali.. @CFSCentral
218 Followers 474 Following I'm a science reporter who's covered ME/CFS since 1994 in print and on CFS Central, & co-author of Sugars That Heal: The New Healing Science of Glyconutrients.
FP @braver10percent
186 Followers 464 Following
Steve Chalmers @FStevenChalmers
1K Followers 3K Following Let's tear down silo walls in the data center. Spent a decade each in servers and storage, then networking. Consultant to Daedaelus Corp. Retired from HPE.
Adaira Beith @bei_ada
45 Followers 5K Following
ME Foreningen @MEForeningen_dk
771 Followers 2K Following ME Foreningen er patientforening for sygdommen ME (Myalgisk Encephalomyelitis) #MECFS #sundpol. Kontakt [email protected]
LorsP @p_lors
382 Followers 1K Following Don’t tend to Tweet much of my own opinions/thoughts because other people say it way better! Person of many acronyms: ADHD / ME/CFS / POTS (& maybe MCAS)
Fishupahill @Fishupahill
99 Followers 308 Following Listen to the waves, they form the tsunami that will wash away the persecuters of pwME and pwLC. Formerly many things. Now missing, but not gone.
Diko @DKoulian
265 Followers 429 Following BS in Business, suffering with #LongCovid since the beginning of 2021. #CovidTinnitus
♥ Sarah ♥ @SaZzzby
798 Followers 3K Following Mum of two, disabled by a chronic illness and ignorance, just trying to make the most of life! Passionate about equality issues, inclusion, access.
NickyProctor @NickyProctor
1K Followers 4K Following Writing up my #PhD in coach learning & development @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
SalvatoreAust @AustSalvat75224
110 Followers 2K Following
Jan L Wade Esquire @JanLWadeEsquire
1K Followers 2K Following I fight to expose crimes against humanity in this Holocaust 2.0 dystopian hellscape we’ve created - lover of the good the true & the beautiful #ProsecuteFauci
Carol Joy @HealingCrone
3K Followers 5K Following I never amounted to much. Now I'm older, so I matter even less. Still have a great dog, decent husband & truly fab friends. Am impervious 2 over hyped "illness"
Claire @ClaireW1111
305 Followers 1K Following
Joe Connolly @joec_chicago
441 Followers 5K Following
Henry Watt @Charlie_Dimmock
10K Followers 8K Following #Hypermobility #Dysautonomia #DJDimmock #Physics #Cosmology #English #Spanish #Poetry #NaturalPhilosopher #Teacher #AI #AGI #Data #Art #Arsenal #GoogleCloudNext
Ruth @german_ruth72
205 Followers 3K Following
CBDForChronicFatigue @CBDForCFS
14 Followers 59 Following
Suzan Jackson @livewithmecfs
4K Followers 4K Following Writer with ME/CFS & Lyme & son w/#MECFS & #Lyme; love to travel, read & spend time outdoors w/family & friends; write 2 blogs & author of chronic illness book.
Kev @Greeninlondon1
588 Followers 2K Following And once the storm is over, you won’t remember how you made it through
Brad @Bradgolf1216
3K Followers 2K Following Bachelor of Biological Science Degree. #LongCovid #TeamAutoantibodies #Bc007. Any tweet is my opinion and not medical advice. Check out my podcast on Spotify
Claudia ✨ @desertdracula
2K Followers 2K Following creative director #fblc 🫠 she/her ✨ “history involved itself” 🦓 💖💜💙🩵 https://t.co/1A1el35TMW
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.
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
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Tom Kindlon @TomKindlon
14K Followers 581 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
ME/CFS News @MECFSNews
15K Followers 713 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Anil van der Zee © @AnilvanderZee
9K Followers 824 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 206 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.
Adam @ABrokenBattery
6K 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.
Paula Knight @Paula_JKnight
6K Followers 4K Following Graphic memoir THE FACTS OF LIFE (2017) Kidlit books x3 author. Disabled. Bedbound 5.5yr v severe #pwME Submerging writer. Total Bedass. Print Disabled she/her
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...
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
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
Hillary Johnson: jour.. @oslersweb
4K Followers 952 Following The Why "Delicious" "Devastating" "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose."
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Alisontomyradio @arisonsned
3K Followers 5K Following ME MCAS Lyme.Still with humour.Satire Music.Dream of life without illness. Wanna ride my bike. Cat & Dog Botherer.YP Counsellor retired. Retweet not endorsement
All of them snollygos.. @OnlyEnnui
3K Followers 2K Following @onlyennui.bsky.social Ex philosopher. #MEcfs activist #hEDS. spinal injury, prescribed benzo withdrawal = hell Expect swearing & sarcasm
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]
Martin Hippe @pausedME
7K Followers 475 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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✨
Mitodicure @mitodicure
632 Followers 57 Following Start-up with the mission to cure ME/CFS and Fibromyalgia. Follow us on LinkedIn: https://t.co/KrQ7qyxX0f
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
G R A C E 🌸 @withgrace___
91 Followers 292 Following 🥀 severe ME/CFS mama to baby son ❤️ heart full, body broken 🌻 INFJ
Renate-new account�.. @Renate834601
95 Followers 442 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Susan - M.E/Fibromyal.. @mefibromyalgia1
2K Followers 5K Following ME/FM patient since 2006, I hope some info helpful to those unaware of them you can also gain an insight. Advocate & sufferer invisible illnesses/chronic pain
Tapanui 'Flu @TapanuiFlu
2K Followers 3K Following Kiwi Nana. Ex social scientist. #MyalgicEncephalomyelitis since 1983 #TapanuiFlu epidemic Hamilton #NZ outbreak. Mostly housebound. On welfare. #LongCovid ally.
Eileen 🔊 @TurnItUp4ME
2K Followers 879 Following Advocate; Former Federal Committee Advisor, Department of Health and Human Services, Washington, DC
MumME @pamrosling
1K Followers 5K Following Mum & carer to severely Covid-vaccine-injured daughter desperate for treatment to get her life back :-( Also passionate about climate and biodiversity crisis.
Attomarker @Attomarker
487 Followers 676 Following Providing gold-standard rapid diagnostics that support personalised medicine and patient empowerment. RTs not an endorsement. Founder: @ProfAndrewShaw
Post-Viral Trials New.. @postviraltrials
4K Followers 159 Following News and updates about treatment trials for Long Covid, ME/CFS, POTS, and other post-viral and related illnesses. DM if participating in a trial or interested.
Andrew Shaw @ProfAndrewShaw
308 Followers 221 Following Academic Entrepreneur, physical chemist needing to know how things work, CEO and Founder of Attomarker Ltd - the new Science of Diagnosis.
Chris Ponting 💙 @CGATist
4K Followers 144 Following Disease genomics & molecular mechanisms; ME/cfs: https://t.co/cBhrtLCi6M @ Edinburgh University. Views - my own. He/him.
Rob Wüst @RobWust
6K Followers 774 Following Assistant-Professor Muscle Metabolism at Vrije University Amsterdam, Netherlands. Interested in skeletal muscle function in health and disease
Dr Ian Frayling 🇺�.. @Doctor_IMF
3K Followers 1K Following Past-President Association of Clinical Pathologists, patient, retd NHS. I usually do hereditary cancer. Trustee of @Long_Covid Support. Views my own.
Suzan Jackson @livewithmecfs
4K Followers 4K Following Writer with ME/CFS & Lyme & son w/#MECFS & #Lyme; love to travel, read & spend time outdoors w/family & friends; write 2 blogs & author of chronic illness book.
ME-Aktuell.de 👨.. @meaktuell
1K Followers 502 Following Myalgische Enzephalomyelitis (ME) ist eine verheerende körperliche Erkrankung, die bisher unzureichend erforscht ist.
Julie Rehmeyer @julierehmeyer
8K Followers 1K Following Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.
Brad @Bradgolf1216
3K Followers 2K Following Bachelor of Biological Science Degree. #LongCovid #TeamAutoantibodies #Bc007. Any tweet is my opinion and not medical advice. Check out my podcast on Spotify
Elizabeth Ansell @elizansell
692 Followers 2K Following Founder @njfatigue. Previously at Showtime and ABC News, among other places. Quit career due to #MECFS. This is #NotJustFatigue.
Long Covid Commentary @LongCovidComms
3K Followers 4K Following Long covid patient who thinks the world needs more resources to solve and treat long covid and me/cfs #FBLC #pwLC #LongCovid #mecfs #pwME treat #PEM
Eureka Health @EurekaHealthApp
4K Followers 213 Following We're on a mission to accelerate the discovery of new treatments and cures for chronic disease.
Alethea Black @AletheaBlack7
335 Followers 3K Following Writer, iconoclast daughter of Fischer Black. Free speech advocate. Champion of the disenfranchised. Optimist. ✨
Billboards for LC/MEC.. @LCMEBillboards
1K Followers 215 Following Public awareness campaign. We need biomedical research and treatments for Long Covid/ME/CFS now. https://t.co/zppTxZjTK8
LA2LAGURL @La2Arceri
451 Followers 2K Following Questioning everything : 𝚖𝚎𝚗𝚊𝚐𝚎𝚛𝚒𝚎 𝚘𝚏 𝚠𝚑𝚊𝚝 𝚠𝚊𝚜: spiritual & ᴺᴬᴿᶜᴵˢˢᴵˢᵀᴵᶜ abuse survivor #CPTSD: severe #ME/CFS: POTS, CCI 20yrs
R Dartez @DartezRyan
181 Followers 1K Following Father, Husband,Son/Medical Field/Business Owner/#POTS, #LongCovid, #Dysautonomia
it's ME Ingrid @MElotje99
733 Followers 4K Following Carpe diem and take no shit 👊 One of the #MillionsMissing due to #MEcfs #PAIS
Kendra F @SurvivingCFS
4K Followers 5K Following Disabled for a decade due to MECFS| Escaped homelessness | I’m advocating for those who can’t | See highlights tab for my free masking and disability art.
Fibro Jayne @transchronic
8K Followers 6K Following Neurodivergent, highly empathetic, gullible & realist procrastinator. Super fatigued and underwhelmed TV ratings obsessive.
Monica @InsularEntropy
705 Followers 3K Following Electrical Engineering Student (Undergrad, Senior) with a special interest in #Neuroscience. I discuss #Akathisia.
Pete Caruso @PeteCaruso_
446 Followers 856 Following Find treatments for Long Covid, ME, VaxInjury, POTS, & Sjogrens chronic illnesses. Tweeting for spouse, ME survivor of 25+ years. @petecaruso.bsky.social
Emily Johnson (is on .. @emily_rj
8K Followers 6K Following Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news consults. @the_dailydis. #CripTheVote
Sebastian Ang @mixedrealityTV
9K Followers 2K Following MRTV is a YouTube channel dedicated to covering the most exciting developments in VR and AR!
Jemsek Specialty Clin.. @JemsekClinic
646 Followers 197 Following We are a leading infectious disease practice specializing in the treatment of #LymeDisease and other tick-borne illnesses #ChooseLifeOverLyme #JemsekProtocol
Dr. Daniel Cameron @DrDanielCameron
3K Followers 134 Following Dr. Daniel Cameron is an expert in diagnosing and treating Lyme disease, author and twice past president ILADS.
Dr Carsten Nicolaus M.. @CarstenNicolaus
2K Followers 1K Following Lyme & Tick Borne Diseases Specialist - #lyme #lymedisease #chroniclyme #tickbornedisease #morgellons #bartonella #babesia #coinfections
Pimax @pimaxofficial
15K Followers 278 Following 2024 CES Innovation Award 🏆 Pimax Crystal Get exclusive discounts & connect with a global community of users: https://t.co/yp3CVrfZl4
trymytech @trymytechGlobal
1K Followers 8 Following trymytech helps people to try tech gadgets or earn money with the gadgets they already own.
Abraham @AbrahamAubry
2K Followers 4K Following Civil Engineer-Architect. Urban Planner. Passionate about design, architecture, art and science.
Marilyn Gavranovic @marilyngavrano1
686 Followers 350 Following Mum, Grandma, Advocate for Mother Nature & Human Rights; Disability Support Worker, Teacher- retired
Nic @LilNic000
471 Followers 3K Following #Disabled & 10x #ChronicIllness inc #pwME for 20 yrs + prob #AuDHD please #WearAMask whovian, history grad, Christian, grey/demi, #ClimateActionNow
Emma 🦋 @Emma40025133
2K Followers 988 Following Chronically ill with MCAS, POTS & ME/CFS. All brought on by covid infection in January 2021.
bethereificould @bethereificould
605 Followers 1K Following A mirrorbox and map taking messages from people with ME/CFS or long COVID to places they love but can no longer get to #ACEsupported #socialart #missingmillions
Petra @Petra_v_3l
237 Followers 402 Following #AllTogetherWeBattle_InvisibleDiseases #B12 🩼🩸 #ME🩵 #FM 💜#Glucoma. Ook op 💙☁️!
MonzaMayhem @MayhemMonza
678 Followers 2K Following Mother of child with ME/CFS. Trying to create moments of joy in a challenging life.
Gez Medinger @gezmedinger
20K Followers 722 Following Author of The Long Covid Handbook with @daltmann10, published by @penguinUKBooks (see link). Represented by the Blair Partnership @TBP_agency
Patient-Led Research .. @patientled
27K Followers 616 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
S.Jones @seastarsal
1K Followers 2K Following Teacher, librarian, ME/CFS cartoonist. ME/CFS for 32 years.
@FrickerAlice @NeurologistMom Why is no one commenting on the low pulse ox? Is that a glitch or steady? I’d go to the ER.
@FrickerAlice With blood oxygen at 78% and a heart rate of 210 this is a medical emergency. You need to go to the hospital. I understand that’s extremely difficult to near impossible with severe ME/CFS but it’s warranted.
Lying flat, doing absolutely nothing. With a HR of 215. However, Alice has been awake for OVER 140hrs, could this be making it worse? 🤪😭#VerySevereME #PoTS #vasculardysfunction #pwME #NEISvoid #insomniac #tachycardia #hEDS #severeME
@mitodicure It is a big hope. What is the advance in that line? Do you have a time line to show a treatment?
@mitodicure Any preclinical studies available?
@mitodicure Hi, your work sounds interesting. Could you please clarify: does your company focus on chronic fatigue syndrome (an outdated term for myalgic encephalomyelitis) or on chronic fatigue, as these are two very different conditions?
@mitodicure Oh, wow, that is what I have been waiting for! I hope you can start your first study soon and get support from the @BMG_Bund and @BMBF_Bund.
@mitodicure If for any reason , funding is not available. Share the drug and let us be free of this illness. Dont make this about $
@mitodicure @ValeBodi That’s great news, thanks for your research. Can you please not refer to MECFS as chronic fatigue, it is a very vague term for the myriad symptoms actually experienced by patients.
@mitodicure Interesting Website! A Drug against PEM, would be groundbreaking for millions of people suffering…Hope Phase 1 can start soon
#mitodicure launched its website: mitodicure.com We are the only #MECFS start-up company worldwide developing a novel targeted drug. Support innovative drug development aimed at healing ME/CFS, which is also the most severe form of #LongCovid. #BMBF #MECFSAwarenessDay
@mitodicure @MECFSNanoneedle background on this drug healthrising.org/blog/2023/02/2…
It would be great to have more details on this 👇🏼 + comments from the wider #ME research community @OpenMedF @mecfsbiobank @MEResearchUK @Invest_in_ME @OxMEDiscovery @BhupeshPrusty #MyalgicEncephalomyelitis #MEcfs #pwME #LongCovid
#mitodicure launched its website: mitodicure.com We are the only #MECFS start-up company worldwide developing a novel targeted drug. Support innovative drug development aimed at healing ME/CFS, which is also the most severe form of #LongCovid. #BMBF #MECFSAwarenessDay
I’m fucking tired of #MECFS PEM being described in a way that makes it sound like a temporary payback. Oh well, maybe it’s worth it then. NO! PEM can be PERMANENT! Exertion can make you PERMANENTLY MORE DISABLED! This does not happen in ANY other disease! I will die on this hill.
Reposting my reply for anyone Professor Garner has blocked. #MECFS #pwME #pwLC #LongCovid #chronicillness #MyalgicEncephalomyelitis
It's #EDSAwarenessMonth 🦓 & clearly @NicolaCJeffery's cervical junction got the memo as several of her cranial nerves seem to be going haywire - causing dysphagia pressure headache & generalised maxillofacial neuropathy & discomfort. Or rather - she's got a pain in her neck 🙄
Full article: Sajid Javid: patients with ME are being ‘dismissed’ by doctors The former health secretary said care was being held back for sufferers of the neurological disorder because of a lack of specialist NHS services archive.ph/2024.05.02-150…
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