Karyn C @KarynMECFS
ME patient trying to help create a better future for a grossly neglected community. Australia Joined May 2018-
Tweets48
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Followers67
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Following73
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Likes1K
We’re so thrilled to announce that we have partnered with @OpenMedF to launch the fifth OMF international research centre right here in Australia! 🇦🇺 The centre will be located in Melbourne, with our own Chris Armstrong as director! #mecfs emerge.org.au/omf-australia
The US Mayo Clinic no longer recommends GET/CBT for #mecfs. The CDC stopped recommending these back in 2017. Yet Australia’s @RACGP continues to recommend these harmful treatments. When will RACGP follow evidence & update, @RACGPPresident? meaction.net/2020/09/16/may…
“if you are a doctor, remember people with ME/CFS have experienced this for decades”. May the powers-that-be not have to experience this to start making a difference
“if you are a doctor, remember people with ME/CFS have experienced this for decades”. May the powers-that-be not have to experience this to start making a difference
In recognition of Severe ME Awareness Day 8 Aug 2020. The view from my bed - through a bedside glass of water at 5am #TheViewforME
“And when Superman finds the cure I will rise with you and we will feel the world again. Together.” -@DafoeWhitney #MECFS #MECFSAwareness facebook.com/11233856363717…
Coronavirus is a reminder that the welfare state is not “a burden” but a form of collective insurance against life’s hazards: ill-health, disability, the death of a partner, unemployment. It should never have been so weakened by cuts.
Dr Dan Suan is the superhero immunologist from dear Robbie's story (abc.net.au/radionational/…). He knows. Here is his observation #Covid_19 #coronavirus #covid19Aus #covid19
So proud of my little granddaughter. Doing it for ME #MillionsMissing
ME/CFS patients simply want access to the same level of care, assistance & research that similarly disabling illnesses receive. So we can have a shot at becoming contributing tax-paying members of society again. Why is that too much to ask? #MillionsMissing #mecfs
Australians with ME/CFS are Missing from the NDIS. Join with us and demand change. #MyalgicEncephalomyelitis #MyalgicE #CFS #MillionsMissing #invisibleillness chng.it/k4vwQv7j78
To the patients who have borne stigmatisation, humiliation, neglect, isolation & immense suffering for decades, but have battled on from their beds with ceaseless resolve & persistence: I salute you and thank you all from the bottom of my heart. Our future starts here
To the patients who have borne stigmatisation, humiliation, neglect, isolation & immense suffering for decades, but have battled on from their beds with ceaseless resolve & persistence: I salute you and thank you all from the bottom of my heart. Our future starts here
Go Aussies!
US journalist @davidtuller1 about Australia: “Gov’t agencies as well as the @RACGP seem not to have noticed that international support for GET/CBT as the standards of care for #mecfs has been disintegrating.” @DrBastianSeidel virology.ws/2018/05/14/tri…
GET cost me my ability to work Dr Seidel. Please remove PACE material and harmful Graded Exercise Therapy recommendations from the RACGP HANDI guide for Chronic Fatigue Syndrome. See bit.ly/PEM-GETPrimer and bit.ly/2I8N09w #MillionsMissing #mecfs @DrBastianSeidel
Doin it for her Nannie ❤️ x.com/meactnetau/sta…
Doin it for her Nannie ❤️ x.com/meactnetau/sta…
Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne
Mr. alex de minaur @alexDminaur_
1 Followers 395 Following Professional Tennis player 🎾🎾. Proud Aussie 🇦🇺. Official private account!
Alex di minuar @DiMinuar89701
33 Followers 4K Following Official fanpage professional tennis player🎾🎾. Proud Aussie 🇦🇺
Luna @Nileau187782
3 Followers 248 Following Can we be good friends? I'm looking for a serious relationship
KK @KSannara
585 Followers 3K Following #ME #MECFS #LongCovid #BildungAberSicher #Petition #MECFS. ➡️https://t.co/EuFUEYyf9j ⬅️
Hrefna @hrefnask
1K Followers 869 Following #Mecfs & #Pots since 2012. Currently moderate/severe and mostly housebound. 🏳️🌈 She/her From the river to the sea, Palestine will be free 🇪🇭
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.
Justice is like air @JusticeIsAir
198 Followers 2K Following Justice is like air; without it we cannot survive; We’re suffocating from lack of Justice! #DisabilityJustice #pots #ptsd #depression #migraines #mecfs etc
ME-CFS Diary of Truth @MECFSdiarytruth
15 Followers 74 Following How it really feels to have moderately severe CFS/ME, without the filter I usually use to protect loved ones.
Marie-Claire Seeley @mcseeley
668 Followers 420 Following Clinical Nurse, researcher, CEO of The Australian POTS Foundation, advocate for those with POTS and LongCOVID
ME/CFS-Buch @mecfsbuch
2K Followers 5K Following ME/CFS, die neue, alte Volkskrankheit. Verständlich erklärt, was man tun kann, warum sie so viele Covid-“Genesene” trifft #mecfs #cfs #postcovid #nichtgenesen
Movie About M.E. @Movie_About_ME
479 Followers 2K Following A documentary that seeks to shine a light on and tell the stories of those suffering with myalgic encephalomyelitis and Long COVID.
Annette Streich @annetteStreich9
965 Followers 2K Following ME/CFS , POTS and fibromyalgia . Love food , foreign films and my wee Siamese beasties .Once was witty now happy if I can form complete sentences 🤪
Alisha Whittam @alishawhittam
605 Followers 653 Following Professional Nap Taker & Netflix aficionado. Conquering ME, Endometriosis and De Quervains syndrome with a dash of humour & sprig of sarcasm.
Jones land @Jonesland3
11 Followers 166 Following
MECFS352 @mecfs352
169 Followers 290 Following A thinktank of tertiary students in Australia building a portfolio of evidence-based information on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Anna @halcionandon
2K Followers 5K Following Inquiring mind derailed by #SevereME #LongCovid #Hypothyroidism #Migraine #POTS #ChronicPain & more #FBLC. Health in hell mode-NEED SAFE HOME, ADVOCATE, GP
⭕️MECFS/LC⭕️E.. @Arizona10238417
1K Followers 5K Following Wer möchte kann von Amazon kleine Gutscheine an [email protected] für Kuscheldecken, Wärmekissen, usw. geben. Vielen ❤️ Dank
Cambridge ME group @CBMEgroup
1K Followers 2K Following CBME is a support group based in #Cambridge UK for people with #MECFS, #MyalgicE , #CFS, #PostViralFatigue, #Fibromyalgia, including #pwME caused by #LongCovid
Rachel (Tala) #pwME @RachelKayWeiner
821 Followers 950 Following (she/her) neophyte mycophile; student of philosophy & Afro-Asiatic languages; existentialist. Activist, it seems. #Harvard #PeaceCorps #SCA #ChosenFamily
Emma-Louise @RumEloise
523 Followers 2K Following Bi, atheist, suffered from M.E for 20yrs now. Interested in raising awareness of the injustices surrounding M.E.
Valeska Tietze @val_140137
549 Followers 1K Following
Gilda (Jill-duh) @GildaFoster
492 Followers 5K Following 🇺🇦 adult language is my 1st language 🇺🇸 #veteran⚓US Navy (Reagan era) #ptsd #mst #MECFS #BLM #lgbtqia #vetsresist https://t.co/99Mx5pHfnB
PolyBio @polybioRF
10K Followers 2K Following 501(c)3 transforming how #LongCovid, #ME/CFS & LongLyme are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
penny #ME🕊️🕊�.. @TheOldLostRoad
2K Followers 3K Following 31yrs #MECFS. Lone mother of daughters. Left/Green. I have been a hermit and an outcast. And now carer. Not waving.
ME Advocacy Network A.. @MEAdvNetAu
1K Followers 255 Following We fight for health equality for Australians with ME/CFS. We’re an independent group, not affiliated with any other group. Formerly #MEAction Network Australia.
Wiebke Boeckmann @BoeckmannWiebke
1K Followers 1K Following ~inactive account~ 28 y/o German who wants her 31 y/o brother with severe ME/CFS back in her life. Help us - let’s raise awareness together.
Inte Bara Trött @inte_bara_trott
299 Followers 437 Following företagare & sjukpensionär pga ME/CFS. även: inte bara röd, inte bara snäll, inte bara svensk, Vet att vi bara har EN PLANET!
#MillionsMissing Swed.. @MMissingSweden
808 Followers 907 Following #MillionsMissing is a global campaign for ME health equality! #MECFS #pwME https://t.co/BPrULX2K3x #MillionsMissingSweden
Kerrie McCure @KerrieMcCure
141 Followers 421 Following I try to write. I sometimes succeed. I also take photos, which distracts me from trying to write. Living with #MECFS #HSD #EDS #POTS
CastipwME @CastiPanizo
579 Followers 3K Following ℙ𝕒𝕔𝕚𝕖𝕟𝕥𝕖 𝕕𝕖: #EɴᴄᴇғᴀʟᴏᴍɪᴇʟɪᴛɪsMɪᴀʟɢɪᴄᴀ:Cɪᴇ-10 G93.3 ʏ Cɪᴇ-11 8E49 #ME 💙 #pwME 💙 #LongCovid #𝔼𝕟𝕗𝕖𝕣𝕞𝕖𝕕𝕒𝕕𝕖𝕤ℙ𝕠𝕤𝕥𝕀𝕟𝕗𝕖𝕔𝕔𝕚𝕠𝕤𝕒𝕤
Carbonara - #ME/CFS #.. @BettinafightsME
2K Followers 3K Following 18ys+slowly dying from #verysevereMECFS #pots #MCAS #heds #migraine #ClimateChange #ClimateCrisis #StopAnimalcruelty #EndSpeciism #GoVegan #FuckRacism #FuckAfD
ME/CFS Münster @CfsMunster
1K Followers 2K Following just another #pwME living in Münster | disabled by #MECFS | https://t.co/1d5WI6rtAb
janna @jan_nahlinke
762 Followers 2K Following Medical Writer, Pharmacist, Patient Advocate & M. Health Policy student. Interest in complex chronic illness+ rare disease (EDS + Co); MECFS.
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
Dr Sarah Myhill @MyhillNews
6K Followers 5K Following Pls do not use to report health concerns.Detailed questions about Dr Myhill's protocols not answered.Staffed by Craig Robinson on a voluntary basis
DizzyClap4ME @dizzyclap4me
144 Followers 570 Following Do #DizzyClap4ME challenge to help those with chronic illness (like my Mummy) on PERMANENT #lockdown How many can you do?! #millionsmissing #myalgicE #pwme
Dress for ME Charity .. @DressFor_ME
3K Followers 5K Following I am @JenGovey & use my powers of #cosplay to raise money for @invest_in_ME Take the #DressForME challenge! https://t.co/jOqrVcbVKb 😍 #pwME She/they
anti-dogmatism @Regula2222
292 Followers 479 Following #ME ICC 8.5.11 ICD10 G93.3 #Infection in TU 2009 & #FQAD #NichtGenesen #MyalgicEnzephalomyelitis #pwme #millionsmissing #dg_mecfs #OpenMedF #MEawarenesshour
Chani Sterling @ChaniSterling
18 Followers 53 Following Your life is like the morning fog, it’s here a little while, and then it’s gone. James 4 14 NLT ~ Battling ME/CFS ~ I live one spoon at a time 🥄
#MYCYP450 @MyP450
871 Followers 3K Following Genetics, Lifestyle, Environment. Gene deficiency=toxin overload, systemic inflammation, pain. Tweets are for educational purposes only. [email protected]
KatlaT.CarersForCovid.. @KatlaToans
262 Followers 783 Following Leftie ex-academic with a hearty lust for life & enquiring mind.Typical Brit, does anything for animals & a cuppa tea. Carer. Living with #MECFS since 2010 💙
MECFS Stuttgart @MECFS_Stuttgart
2K Followers 2K Following Informationen & Aufklärung über #MECFS und #LongCovid 🇬🇧🇩🇪
Protact @protact_inc
286 Followers 264 Following #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LymeDisease #cancer #PayItForward #JesseStoffFanClub #CultOfFacts #VisitShutIns
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Moneysmart @MoneySmartTeam
60K Followers 617 Following Moneysmart helps Australians take control of their money and build a better life with free tools, tips and guidance. Start here https://t.co/QkYVgvOLsP
Visible @visible_health
5K Followers 134 Following The activity tracking platform for illness, not fitness. #MECFS #LongCovid #invisibleillness
Australian POTS Found.. @AustralianPots
311 Followers 123 Following Australian POTS Foundation│Non Profit Organisation. We strive to improve awareness, research and education for those with POTS
Marie-Claire Seeley @mcseeley
668 Followers 420 Following Clinical Nurse, researcher, CEO of The Australian POTS Foundation, advocate for those with POTS and LongCOVID
Dr KL @dr_kevinlee
6K Followers 2K Following physician, masters health studies, health advocate. Not medical advice❤️/RT≠endorse
Dr Eric Levi @DrEricLevi
50K Followers 2K Following Otolaryngologist Airway Head & Neck Surgeon | Speaker | Podcaster | Now on Threads, Instagram, TikTok & Facebook.
Allison Wallis ♿ @allylovespono
5K Followers 6K Following Disability Columnist, Honolulu Civil Beat https://t.co/lLVgUp2CcT Master of Typos, Raiser of Hell https://t.co/0nTnUuZagK ✡ She/Her
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.
Mojo Crowe @MojoCrowe
4K Followers 164 Following Embrace your weird. Own your story. Find your mojo. || A confidence co. inspired by athletes for the everyday person.
AUS Olympic Team @AUSOlympicTeam
108K Followers 1K Following Official X (Twitter) account of the AUS Olympic Team & Australian Olympic Committee. #AllezAUS
Norris Lab @NorrisLab
1K Followers 117 Following Research Lab at the Medical University of South Carolina #HeartValveDisease #MitralValveProlapse #EhlersDanlosSyndrome #Fibrosis
Flightradar24 @flightradar24
1.1M Followers 622 Following Track air traffic in real time from all around the world! Apps: https://t.co/AnZhJUIrBg | FAQ: https://t.co/WkTgAaePHs | Support: https://t.co/BomORktp7R
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
Hypermobility MD: Dr .. @BluesteinLinda
8K Followers 662 Following 🩺 Pain & inflammation specialist 🦓 Ehlers-Dani’s, HSD & MCAS 🎙Founder Bendy Bodies Podcast ⚕️@mayoclinic trained 🚫Not medical advice.
Emma Reinhold @DrEReinhold
7K Followers 4K Following Former GP/Research/Advisor on #EDS #MCAS #MUS #fatigue #EDI Disabled🌈ally #NHS #gardening #miniatures Often irreverent Never disrespectful Views are mine, obvs
PolyBio @polybioRF
10K Followers 2K Following 501(c)3 transforming how #LongCovid, #ME/CFS & LongLyme are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
penny #ME🕊️🕊�.. @TheOldLostRoad
2K Followers 3K Following 31yrs #MECFS. Lone mother of daughters. Left/Green. I have been a hermit and an outcast. And now carer. Not waving.
hEDStogether @hEDStogether
4K Followers 173 Following Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)
Dr Björn Bragée @BjornBragee
1K Followers 101 Following MD, specialist in pain medicine, in anestesiology and in intensive care. Researcher. Founder of Bragée Clinics and ME-center. Married to Britt, 4 kids, 2 dogs.
Alissa Zingman MD MPH.. @DocZing
5K Followers 1K Following PRISM Spine and Joint, https://t.co/xU10wz4Q5O, Research https://t.co/1kUMpVueSJ, Hypermobility Care, Wife/Mom/CEO/Dancer. Tweets are not medical advice.
Dr Sandeep Gupta @DrSandeepGupta
1K Followers 620 Following Specialist general practitioner, researcher in inflammatory and mould-related illnesses. Views are personal and are not formal medical advice.
Kerrie McCure @KerrieMcCure
141 Followers 421 Following I try to write. I sometimes succeed. I also take photos, which distracts me from trying to write. Living with #MECFS #HSD #EDS #POTS
janna @jan_nahlinke
762 Followers 2K Following Medical Writer, Pharmacist, Patient Advocate & M. Health Policy student. Interest in complex chronic illness+ rare disease (EDS + Co); MECFS.
Paul Garner @PaulGarnerWoof
6K Followers 1K Following Emeritus Professor, Liverpool School of Tropical Medicine
Dr Siouxsie Wiles @SiouxsieW
63K Followers 3K Following Microbiologist & Associate Professor. Loves Lego. She/her. TEDx talk: https://t.co/qDiffsMeAX Kids show: https://t.co/iTE0obSNRM
SurvivorAU @Survivor_AU
32K Followers 69 Following #SurvivorAU: Titans v Rebels Starts 7.30 MONDAY 🔥🌴 Who will rise? 💪
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.
John Millman @johnhmillman
28K Followers 171 Following Australian Tennis Player. Brisbane Boy. @HIAorg
Ody @OdyO11
3K Followers 5K Following Chronically ill. Medical research, better care for underresearched & rare conditions, disability rights & ethics. @[email protected] 🌌 OdyOdy.b...
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.
Whitney Dafoe @DafoeWhitney
10K Followers 38 Following Severe ME/CFS patient and advocate. Photographer, filmmaker, artist, creative. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊
MastCellChat @MastCellChat
3K Followers 821 Following Took a decade to get a diagnosis. Raising awareness on Mast Cell Activation Syndrome, symptoms, protocol & research to improve quality of life.
Simon McGrath #mecfs @sjmnotes
4K Followers 243 Following Been ill for a while. Mostly ME/CFS biomedical research and news
lauren lipsay @laurenlipsay
2K Followers 2K Following lurking before I leave • music, beauty, internet nonsense
The Ehlers-Danlos Soc.. @TheEDSociety
24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Ben H @benh_mecfs
6K Followers 3K Following ME/CFS patient advocate, @OpenMedF science correspondent. Bedbound. Former: biochemist in training, Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.
Ehlers-Danlos Support.. @ehlersdanlosuk
19K Followers 11K Following EDS UK is committed to changing the futures of people with Ehlers-Danlos syndrome (EDS) and HSD. With awareness and early diagnosis we can change lives.
Derya Unutmaz, MD @Derya_
13K Followers 5K Following Professor @jacksonlab Human immunologist #Immunotherapy #health #Cancer #MECFS #longevity #COVID19 #AI #syntheticbiology #CRISPR #Scifi #Technology #robots
Karen Scott @KSkarenscott
539 Followers 251 Following Ex-SEDS /Admin of Millions Missing. Fighting for help for those with Ehlers-Danlos or M.E. Fused C0-T1 & living best life possible in France.
Jeff Wood @jeff_says_that
3K Followers 429 Following I solved my own case of post-viral ME/CFS. I built a new model of ME/CFS that may also apply to Long COVID. I'm on the Neuro Research Team at Mt. Sinai.
Jennifer Brea🦒 @jenbrea
41K Followers 2K Following Filmmaker @4mmfilm @unrestfilm @longroadhomedoc. @MEActNet co-founder. Dropped out Harvard Poli Sci/Stats Ph.D after virus. #MECFS, #longCOVID
Tanya Plibersek @tanya_plibersek
346K Followers 1K Following Australian Minister for the Environment and Water. Member for Sydney. Authorised T Plibersek, ALP, Redfern.
1Password @1Password
146K Followers 13 Following The best way to keep you, your family, and business safe online. Go ahead. Forget your passwords.
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Dr Mark Guthridge @Dr_M_Guthridge
6K Followers 638 Following Deakin Research Scientist (PhD) examining immunology, metabolism, hematology, cancer, cytokines, ME/CFS. Views are my own. Tweets not medical advice
John Leslie Whiting @JohnforCFS
248 Followers 148 Following Specialist Physician in Infectious Diseases - ME/CFS expertise since 1987 ****** Old account lost
Crazy day 😅 Thanks for all the support feeling very grateful 🙏
@johnhmillman True inspiration from day 1 always taught me the importance of hard work and getting the most out of yourself! Love you Johnny ❤️
All good things come to an end. After the upcoming Australian Summer I’ll be retiring from professional tennis. I’m incredibly grateful for all the support I’ve had throughout my career. It’s been a thrilling ride living out a dream I had as a kid. ❤️
For the record (seriously FOR THE ACTUAL RECORD) my mum had a stroke today and got admitted to SCG hospital (WA). When the ambo arrived I discussed masking. Here's what happened next: 1/
- My daughter learned how to read at 2 years old. - At 6, she was accepted into a prestigious conservatory for piano as the most talented applicant. - She played complex pieces by Chopin, Liszt, Mozart, Rachmaninoff, and others with ease from a young age. - When they tested her,…
Penelope McMillan describes the experience of Alem Matthees, Perth patient with severe #mecfs. Alem worked to get access to the PACE trial data through FOI requests, and he still feels the impact of this work many years later. #ParlFriendsOfMECFS
Anne Wilson says 5th priority is advocating to NDIA to improve access to NDIS. #ParlFriendsOfMECFS
Anne Wilson says the 4th priority is research funding. This has been neglected for decades and has resulted in lack of sufficient knowledge of the condition and poor treatment options. #ParlFriendsOfMECFS
Anne Wilson says the 3rd priority is optimal care pathways, to ensure that people living with #mecfs have access to appropriate healthcare. #ParlFriendsofMECFS
Anne Wilson: 2nd priority action is the need for updated clinical guidelines. Funding of clinical guidelines is the business of government Australia is far behind many different countries around the world, with clinical guidelines 20 years old. #ParlFriendsOfMECFS
Anne Wilson says that Emerge Aus has identified key priority actions to help create change. 1. GP education. This will help reduce stigma, increase early diagnosis and improve access to appropriate treatment. #ParlFriendsOfMECFS
@Chary_T what is a podcast and why does everybody have one?
@rogerfederer No questions. Just thanking you for inspiring us, thrilling us with your magical play, and making us believe that it's nice to be important but it's more important to be nice. Roger, we will always love you. ❤️
@rogerfederer @RazOlsRF 2006 😉
@RazOlsRF the french open one against nalbandian was super cool (2008 i think?). maybe somebody can find a clip
@BarclayCard18 @andy_murray was born to tell dad jokes and then not smile after
@ptraughber There was a lot of little stuff that i didn't know was creating so much stress that just dropped away, which is really cool. Like a weight being lifted off my shoulders.
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