ME/CFS News @MECFSNews
News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work. Joined November 2015-
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4521 signatures. Please keep it going 🙏 ALL #pwME need this. organise.network/actions/petiti… #pwME #MEAwarenessMonth
TIME's list of the 100 Most Influential People in global health is out today. I'm honored to be a part this group: time.com/time100health @TIME #TIME100Health
TIME's list of the 100 Most Influential People in global health is out today. I'm honored to be a part this group: time.com/time100health @TIME #TIME100Health https://t.co/vwcTESfu2N
The economic cost of #LongCovid covid is staggering! In the US, #LongCovid could result in 1.5 billion work hours lost in 2024 – a potential cost of more than US$152.6 billion A report by @TheEconomist impact.economist.com/perspectives/h…
#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
Here is the #MEDebate yesterday! * @sajidjavid @Andrew4Pendle @johnmcdonnellMP @PutneyFleur @JimShannonMP 💙 #MECFS @carolinenokes @CMonaghanSNP * WATCH debate HERE 👇🔻 m.youtube.com/watch?v=AjOunf… * AND sign ✍️ @MEFoggyDog letter ✉️💥 @VictoriaAtkins 👇 organise.network/actions/petiti…
Following today's Westminster Hall debate on #MECFS our CEO has provided the following video update. We have also released an organisational statement which can be found here: actionforme.org.uk/news/westminst… Links to watch the debate & the full transcript can be found using link above
With your help, #DecodeME has built the world’s largest data set on ME/CFS. We are now welcoming data access applications from researchers who wish to use this in studies into ME/CFS and other diseases. Find out more ➡️ shorturl.at/iBW78
Recruitment for our recent Mason-funded ME/CFS biomedical study in VIC, Australia is LIVE! Please get in touch if interested or have questions. Some more info: docs.google.com/document/d/1-2… #MECFS #LongCovid #Victoria #Science
🚨 Reminder 🚨 Tomorrow, May 1, Sir @sajidjavid MP will be leading a Westminster Hall debate in the Houses of Parliament, 16.30-17.30 You can watch the debate live on Parliament TV: ow.ly/wxan50RsgYs
Another autoimmune @Dysautonomia. "A novel mechanism of idiopathic orthostatic hypotension and hypocatecholaminemia due to autoimmunity against aromatic l-Amino acid decarboxylase" @dysclinic pubmed.ncbi.nlm.nih.gov/38677008/
Royal College of Physicians Edinburgh online event on ME/CFS & #LongCOVID for clinicians & students Tuesday 4th June 2024, 6.00pm – 8.30pm (BST) Speakers include @ClagueNjc36 , @exceedhergrasp1 , @PutrinoLab & Danny Altmann events.rcpe.ac.uk/rcpe-mecfs-and… #MEcfs #PwME
Phenylephrine Alters Phase Synchronization between Cerebral Blood Velocity and Blood Pressure in Chronic Fatigue Syndrome with Orthostatic Intolerance #MECFS journals.physiology.org/doi/abs/10.115…
I'll also point out there's a lot of daylight between No PEM and Mild (50% impairment). This is a challenging population requiring special monitoring and education, because they feel lousy but are good enough at faking being well that we clinicians may assume there's no problem.
I'll also point out there's a lot of daylight between No PEM and Mild (50% impairment). This is a challenging population requiring special monitoring and education, because they feel lousy but are good enough at faking being well that we clinicians may assume there's no problem.
"Toward a Common Research Agenda in Infection-Associated Chronic Illnesses" by the US National Academies of Sciences, Engineering, and Medicine. #MECFS #LongCovid #MultipleSclerosis #POTS europepmc.org/article/nbk/nb…
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...
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]
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]
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
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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
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
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.
Martin Hippe @pausedME
7K Followers 475 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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
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.
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.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Shaney Wright @ShaneyWright
15K Followers 494 Following @WestHam Fan ⚒ | Accidental Centrist; Pro-Pragmatism/Science; Anti-Dogma. Fighting for Biomedical Research into, and Awareness of, #LongCovid. #FBLC
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
Wading through treacl.. @kimisgubbed
3K Followers 3K Following Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬
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✨
Karina Kanepe @KarinaKanepe
145 Followers 254 Following
Tired @Pri_Ro1
0 Followers 36 Following
Romet @Romet25150018
1 Followers 82 Following
thinkin about snacks @pinanoboi
79 Followers 951 Following feed me snacks | smol sassy boy | retired amazon prime | 5/13/20, 1/28/21, 1/3/22
Dc5ff6 🌟 🌍 🏆 @Dc5ff6
3K Followers 5K Following ‼️NO DM‼️Nature, art, and travel enthusiast🗺️. Sharing my adventures and discoveries with you. 🌎🥂🎭🌳
UAE is DUBAI @jmlhUAE
410 Followers 6K Following
Danielle Meltson @DMeltson31816
81 Followers 193 Following
Carol Doucette @CarolDouce30815
10 Followers 142 Following I'm Carol Doucette of Royalston, The Winner of $15k #PCH Big Check, Thanks to all the people at #PCH. Thanks to Leanne Walker for being my claiming agent 🎈🎈🏆
Margaret Reid @margaret_r74408
1 Followers 20 Following
Ken Stout @StoutKenG
7 Followers 20 Following
Le Bleu Garcon @LeBleuGarcon30
2 Followers 53 Following
I Love Butterfly @i_love80787
1K Followers 5K Following
Elly Bailey @ellbail
1K Followers 2K Following 🇵🇸 Welcome to the Recumbent Renaissance. Freedom’s just another word for nothing left to lose. Amor fati. Dercum’s/ME/longcovid. Remission Biome R50
Tally S @TallyS2021
0 Followers 44 Following
Kathleen Lowry @Kathlee10634098
271 Followers 244 Following
Chase @Karoshi3619
19 Followers 55 Following Where I can actually be myself (only for a select few people) | Journal / Chronic Illness / Music / Boyfriend Simp / Non-OW personal account
Dave XRP Lion @xrp_lion50
98 Followers 192 Following son of the most high living God, cousins w/WD GANN sacred math RSR 37 years , philomath,14Gen Am chairman & founder Humanitarian Trust compliance services TM
Chrissi Donovan @PinkNollyNelly
23 Followers 127 Following
J-Tizzle @JustinTuchman
853 Followers 4K Following God Bless America!!! MAGA!! Proud Jew, Proud Zionist, Sales Guru, Proud Husband and Proud Father
Nosreyam 🧀🐊🏌.. @Nosreyam
3K Followers 5K Following Cheesehead loving living in Florida! LetsGoBrandon!@FreeStateFl
Carrie Anna McGinn @Carrie_McGinn
1K Followers 2K Following Post-infectious illness advocate | #PatientPartner | Health Professional | https://t.co/NHXmWbl7bd. | She/Her/Elle | #MECFS #EMSFC #POTS #LongCovid #CovidLongue
Tracey @Tray_c99
1 Followers 27 Following
Scrappy-aka Harpazo-g.. @Scrappy94546226
3K Followers 5K Following
Lottie. @LottieWalks90
0 Followers 23 Following
Jess Plant @IAmJessPlant
6K Followers 7K Following (They/She). 5w4, Autistic & Neurodivergent, Carer, ✝️, ♿, Fat, INFP, 🏳️🌈, Left-liberal progressive socialist, Mentally ill.
KL @NosaGroup
492 Followers 1K Following Documentary filmmaker, photographer, writer, marathon runner. Honesty is paramount. Life on hold with Long Covid and EBV that refuses to let go of me.
Hank Wilkinson @yaichaiz
36 Followers 288 Following
JMSosa @jmsosa_
41 Followers 692 Following
Danijela Stančić @DanijelaStani
1 Followers 10 Following
Luke Olorunofeka @OlorunofekaLuke
13 Followers 264 Following
Sam Hoult ⚡ @samhoult
542 Followers 376 Following Founder https://t.co/XmZ5pnLzQD. I tweet about building my business and Salesforce
Peter Boyd @PBoyd77260
0 Followers 3 Following
Kate @KateHopeOliver
0 Followers 3K Following
NoMedal4ME @NoMedal4ME
8 Followers 48 Following Just like all the healthy people who 'don't have time to be sick', neither do I; unfortunately, though, I don't have the health to be well. ME/CFS for 28 years.
semanoesis 🇪🇺 @semanoesis
31 Followers 105 Following
Anna phylax @APhylax
1 Followers 26 Following
TikiaJan Autodéfense.. @grevepaysbasque
616 Followers 4K Following Autodéfense sanitaire ! anti eugenisme/care /DICV BPCO MAI etc....auto support SRARS COV2 Covid safe anti:fasciste/raciste islamophobie/antisémitisme retouit
Rhea @CynicalTimesTCC
1 Followers 23 Following
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.
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...
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]
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 457 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
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
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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
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. ✊
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
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.
Martin Hippe @pausedME
7K Followers 475 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
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.
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.
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Shaney Wright @ShaneyWright
15K Followers 494 Following @WestHam Fan ⚒ | Accidental Centrist; Pro-Pragmatism/Science; Anti-Dogma. Fighting for Biomedical Research into, and Awareness of, #LongCovid. #FBLC
Sir, Dame, EleanorF #.. @EleanorSews
2K Followers 4K Following Retired lecturer/therapist.(Klein, Winnicott,Orbach) culture, thoughtfulness, piano-player, linguist, textiles, activism @eleanorsews.bsky.social
Alice Wong @DisVisibility
54K Followers 868 Following Created by @SFdirewolf. Disabled oracle. Editor, DISABILITY INTIMACY pre-order https://t.co/Yth6IK1ZCZ Available April 30, 2024
CrunchME @wecrunchme
776 Followers 35 Following Mapping the scientific, tech & advocacy ecosystem around #MECFS, #LongCovid, and other infection-associated chronic illnesses 🗺️ | Organised by @rorpreston
Frau𝕏ausNRW @FrauXausNRW
2K Followers 2K Following MomOf2 mit #LongCovid #MECFS #POTS #SFN - Werde 2024 (vielleicht) gesund ! #UniteToFight2024
Fen, MD @FvRhijn
3K Followers 2K Following 💉*5 | MD w/ #ME due to #LongCovid | ex rheumatology resident | regenerative med | vascular inflammation | scleroderma | harpist | they/them 🌈 views are mine
Paul Mc Daid @paulthedaid
1K Followers 1K Following ME/CFS. Determined father. Physics graduate, science nerd, LFC fan.
NickyProctor @NickyProctor
1K Followers 4K Following Writing up my #PhD in coach learning & development @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Dr Andrew Miller - br.. @drajm
21K Followers 10K Following Past Pres Aust Soc of Anaesthetists, & AMA WA. Columnist @WestAustralian. Podcaster: Miller vs Berger. Posts = political. Like, RT ≠ E. _drajm_ threads
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
UniteToFight2024 @U2Fight_World
4K Followers 131 Following 15th and 16th of May! LC & ME/CFS conference project. community-driven. independent. global.
Dr Anjali Agarwal @Dranjaliphysio2
1K Followers 4K Following Health care Professional, consultant Physiotherapist. Lifestyle consultant. Advocacy Co Director Long covid Physio, treats #EDS #Hypermobile #POTS
Frøydis Lilledalen @FLilledalen
2K Followers 984 Following Psykologspesialist, forfatter, tangodanser og engasjert i debatten om pasientrettigheter og kvinnesykdommer
a_ryback @aryback4
81 Followers 151 Following Current Clare Francis postdoctoral fellow at IGC Uni Edinburgh (Ponting Lab). Obtained PhD from Uni Edinburgh on Wellcome Trust HPGH programme.
Metrodora Foundation @MetrodoraFdtn
376 Followers 415 Following Catalyzing scientific collaboration and discovery to find cures for chronic, multisystem disorders.
angela mv/p 💁🏻�.. @ItsAngInLA
4K Followers 3K Following 🦠 personal #LongCOVID clinical research social acct | she.he.ella.èl| Los Angeles 🐦🙋🏻♀️ #NEISvoid #MCAS #hEDS #HyperPots #MECFS #UCTD #MigraineChat
Danielle Beckman @DaniBeckman
25K Followers 6K Following Neuroscientist working with primates 🐒. PharmD with an MS in Biophysics and a PhD in Biological Chemistry. Microscopy lover 🧠🔬 . #NeuroCovid is real.
Medical News Bulletin @MedNewsBulletin
3K Followers 2K Following A not-for-profit online magazine providing you with the latest news in #health, #wellness, and medical research. Tweets are not medical advice.
Giovanni Berardi @gioberardi1
237 Followers 620 Following Physical Therapist | PhD | Postdoc - Univ. of Iowa | Pain Research
Pain Interest Group @UIowa_PAIN
251 Followers 159 Following University of Iowa Pain Interest Group (PIG) | Website: https://t.co/XhH40JQDBa
Alba Azola, MD @AzolaAlba
3K Followers 804 Following Assistant Professor @RehabHopkins and @HopkinsKids, Long COVID/Chronic Fatigue Clinic. Human, mother, physician, dancer, and scientist! My opinions are my own.
Tara Foti, PhD MPH @TaraFotiPhD
820 Followers 773 Following Perinatal health researcher, Adjunct @usfcoph | Former @kpdor Postdoc, @usfcoph PhD, @URMC MPH | Now #disabled #LongCovid #PostVax #MECFS @RemissionBiome #R50
Lindsay McAlpine MD @LindsayMcA
899 Followers 131 Following Neurologist Expert in Neurologic Post-COVID Conditions (Long COVID) Yale University School of Medicine
Energy Deficit 🔋 @Kim77852906
873 Followers 1K Following Maximise your energy envelope & boost usable hours with assistive technology. ME/CFS & L-C community EnergyDeficit@disabled.
Dianna Cowern @thephysicsgirl
214K Followers 2K Following Science Video Creator, Currently #LongCOVID, MIT Physics, Forbes 30u30 https://t.co/BT5fDLw3NO
S.Jones @seastarsal
1K Followers 2K Following Teacher, librarian, ME/CFS cartoonist. ME/CFS for 32 years.
Alessandra @alexbintqaboos1
1K Followers 487 Following INTELLETTUALE ,MA NON DI SINISTRA. ASSOCIAZIONE LE PERLE. LA DISABILITÀ È UN LIMITE SOLO PER I NORMODOTATI.
Sam @sublimepilgrim
4K Followers 3K Following Security Engineer, MSc Cybersecurity. Long Covid, Vaccine Injury, ME, POTS, SFN. Will not be fallen by the wayside
Maayan Levy @MaayanLevy_Lab
2K Followers 318 Following Research lab @Penn @PennMicro, studying metabolites and their impact on physiology and disease
NIHR Involvement @NIHRinvolvement
19K Followers 659 Following We share learning, events and advice from @NIHRresearch on engaging patients, service users, carers and the public in health and care research
Cortney Gensemer, PhD @CortDoesScience
7K Followers 937 Following Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education
Segata Lab @cibiocm
4K Followers 367 Following The Laboratory of Computational Metagenomics led by @nsegata **We are hiring, get in touch if interested!** Moderator @svetlana_up
Marie @DrMarieMcL
255 Followers 383 Following Postdoctoral Researcher in Exercise Oncology. All views are my own.
Lawrence Hayes @DrLawrenceHayes
1K Followers 1K Following Lecturer and Researcher in Physiology at @LancasterMedSch. Interests: ageing, dementia, long COVID, ME/CFS, and mobile health
Dr. Gerrit Keferstein @mitodoc
558 Followers 530 Following It all starts with energy! Father, Athlete, Bitcoiner, Doctor with a mitochondrial focus.
Marc Veldhoen @Marc_Veld
15K Followers 1K Following Head of Lab, Professor Basic Immunology, T cell expert. Mass blocks reinitiated on abusive accounts and those spreading disinformation.
Sus Scrofa - CLEAN in.. @SusScro58355800
3K Followers 428 Following 🇨🇭 Bin KEINE Auskunftsstelle für alle Fragen hinsichtlich Pandemie oder Medizin. Wer solche Fragen an mich stellt, wird blockiert.
Geoffrey Hallmann @GeoffHallmann
214 Followers 83 Following Fmr Chair - ME/CFS Australia; ITAS Tutor; Fmr lawyer; Fmr ME/CFS PhD Researcher; BBus(Hons), LLB(Hons), DipLegPrac, DipFinPlan, LLM (Ent Gov), MClinEpid, MPH.
Carli Cutchin @CarliCutchin
941 Followers 2K Following Lies in bed. Watches TV. Writes about stuff. Words in @MsMagazine @ElectricLit @CincinnReview @DAME @longleafreview @MAIfeminism #chronicpelvicpain she/her ♿️
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.
Dr. Spartansamurai @lilspartansamu1
4K Followers 5K Following Associate Professor, neuropsychologist studying #MDD in late life, digital medicine developer, ANTI-racist, mom of humans and dogs, #BLM LGBTQ ally, views mine.
Jason Hickel @jasonhickel
257K Followers 1K Following Professor at ICTA-UAB and Visiting Senior Fellow at LSE • Author of THE DIVIDE and LESS IS MORE • Global inequality, political economy and ecological economics
Dr Emma Katz @DrEmmaKatz
37K Followers 3K Following A world-leading coercive control expert. Academic 🎓 https://t.co/NkeltTjD3f In-demand speaker. Author. Find me on Substack. https://t.co/qzUeJixawA
Lara Stanić @StanicMd
663 Followers 352 Following M.D., ENT specialist, IBCFPRS, LongCovid/ME/CFS patient. Hoping to get rid of the last abbreviation
Nico Drost @NicoDrost
4K Followers 2K Following Tot 5-12-23 Tweede Kamerlid ChristenUnie | Komt op voor wie onzichtbaar lijden | Rhenen | FoodValley | Prov Utrecht | man van @CockyDrost | vader van 3d 1z
4521 signatures. Please keep it going 🙏 ALL #pwME need this. organise.network/actions/petiti… #pwME #MEAwarenessMonth
Let’s turbo boost some momentum to get this signed! #meawareness #MECFS @MEFoggyDog 👇🔻 organise.network/actions/petiti…
4521 signatures. Please keep it going 🙏 ALL #pwME need this. organise.network/actions/petiti… #pwME #MEAwarenessMonth
@guustweet You're losing what you thought your 20's should look like - but not your 20's. All any of us can do is live the life we have as best as we can. Unwell with ME/CFS in 1978 - am now 62.
Here it’s my 30s. My 20s were hard but nothing like the losses this decade. My friends advanced in careers, had kids, travel, and I’m here reading 19th century poets like contemporaries, trialing ice baths, tonics, silent hours, grieving, being wary of pathogens, grieving more.
sometimes the realisation that I will probably lose my whole 20s comes creeping in. the fact that this disease is doing that to whole generations: making them lose their 20s, 30s and even worse their childhood (!) when will we take this life wrecking disease serious? #LongCovid
Statistically there had to be at least one Jedi in the pre-Empire days who had ME/CFS.
"Overall, this evidence supports the notion that mitochondrial dysfunction is associated with ASD." I've hypothesized some relation between autism spectrum disorders & a susceptibility to MECFS, so this is interesting. 1/
Biomarkers of #mitochondrial dysfunction in #autism spectrum disorder: A systematic review and meta-analysis sciencedirect.com/science/articl…
@SockFoam @drclairetaylor 10. Then I explained that yes, PAIN is a key symptom of ME. I mean, for heavens sake... it's in the name! "Myalgic Encephalomyelitis" This is typical of my experience with HCPs, they have had literally NO TRAINING or EDUCATION about #ME oh, he did send me for blood tests..
10 days to go until #UniteToFight2024 Preparations are also in full swing. 🔥 Several hundred hours of labour have already been invested. We need the support of all helpers for the remaining days. Share the message where you can. We need a big last push 👍 Patients, carers,…
The AI painting of the day. This is dedicated to all the #MECFS patients who have been suffering from this disease in despair. Inspired by @CaroleBruce17 #ME #LongCovid
@MECFSNews Yup. Give-up+give-in is the answer. Then find those parts of your life, skills you dropped, plans you let slip etc +utilise those in the creation of your new+better self, because now you’re out of the workforce you can develop skills 10mins at a time.
"Lie down for people with ME/CFS! Make them visible. No matter where you are! They cannot draw attention to themselves because their illness keeps them trapped in their beds and their homes." 💪🪻
Lege Dich hin, für Menschen mit der Erkrankung ME/CFS! Mache sie sichtbar. Egal, wo Du gerade bist! Sie können nicht selbst auf sich aufmerksam machen, denn sie sind durch ihre Erkrankung in ihren Betten, in ihren Wohnungen gefangen. #LiegendDemo #MECFS #LiegendDemofürMECFS
@MECFSNews I absolutely agree that the best way to live with #mecfs is to deal with the reality of the illness and push for better support rather than chase useless expensive 'cures'. However, ppl have to come to this realisation in their own time. It took 2 1/2 years before I stopped…
Cystic Fibrosis life expectancy has doubled in 20 years. FDA treatments are now approved, & QOL is better. All because of one strategy - Venture Philanthropy. Here's what we can learn, this might just help Long Covid & ME/CFS research too. youtu.be/nc_Fobkozfc
If you've got chronic fatigue syndrome and/or POTS, might want to keep Nutcracker syndrome on your radar. Similar to May Thurner physiology/syndrome, there is a distinction between Nutcracker physiology and Nutcracker syndrome. ncbi.nlm.nih.gov/pmc/articles/P…
Good Representation of Blood Flow to the brain. Long Covid and ME/CFS patients have been found to have up to a 47% percent decrease in cerebral blood flow when upright on Trans Cranial Doppler Tests measuring flow in the Middle Cerebral Artery. #LongCovid #pwME #Pots
Note to everyone who wishes for a very long and healthy life: Aging is a progressive disorder that eventually results in progressive deterioration of all physiological functions necessary for survival! Try to slow it down until we figure out how to reverse it, soon!
Recap! ⏮️ In case you are a new follower or missed the news: Ed Yong (@edyong209), a science journalist and Pulitzer Prize winner, will speak to the worldwide audience at the #UniteToFight2024 opening ceremony.
Mitochondria aren’t just in skeletal muscle. Mitochondria are everywhere. ✨✨✨ (Including the cells composing the tissues within the body systems you think might be most responsible for #MECFS or #LongCovid pathophysiology. 😉) #mitochondriaNOThypochondria #TeachMETreatME
Our research work on impaired gut microbiome and microbial-derived preparations in ME/CFS and Long COVID just is out. It is now under review. preprints.org/manuscript/202…
@MECFSNews @TIME Thank you so much! Hopefully it will lead to more progress in the field
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