Dialogues ME/CFS @DialoguesMECFS
Website with videos created by Natalie Boulton & Josh Biggs. Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of ME/CFS. dialogues-mecfs.co.uk Bristol UK Joined February 2020-
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Rishi Sunak wants to ban our GPs from being able to sign us off when we're sick! Sign the petition now and demand these dangerous new plans are dropped. 38d.gs/ie_a
I'm incredibly excited about our analysis of the massive omics data we've collected from #MECFS patients over the past 6 years. Just wrapping up our latest paper, about the links between immune parameters, metabolomics, & symptoms. I think it’ll make a major impact in the field😊
My message about the treatment of Severe ME patients in NHS hospitals: patients, families, carers feel stuck between a rock and a hard place. #SaveCarlasLife #ExposeMENow
We are excited to announce that we have been funded by standinguptopots.org to study POTS (with/without LongCOVID).We will seek to understand coagulation dynamics and to characterize microclots and inflammatory molecules within them. @dbkell @BinitaKane Greg Lip @POTSActivist
Congratulations, of course, to all the recipients but a very special recognition for @JoanMcparland (seated photograph) for all the work she has achieved with @hope4mefibroni on raising awareness of #MyalgicEncephalomyelitis 💙
Congratulations, of course, to all the recipients but a very special recognition for @JoanMcparland (seated photograph) for all the work she has achieved with @hope4mefibroni on raising awareness of #MyalgicEncephalomyelitis 💙
1/6 Yesterday I did a thread on #BringMillieHome & #SevereME Some people commented on my proposal that UK ME orgs shd, in coalition, create/fund a Crisis Team for cases such as Millie's. The orgs have cash reserves; this is one way they could be put to good use. Detail follows 🧵
@JacquelynHedden It is hard when you experience the pain of the patient you are seeing who is also a human being with a unique story that must be listened to and acknowledged. However, when you can see that inflammation is at the root of their suffering, there is an epiphany when you realize…
A hugely important piece by @iEllieFry on Millie McAinsh - a teenager with severe ME who is currently in hospital and deteriorating due to medical neglect. I cannot imagine a patient with any other condition being treated this way. mirror.co.uk/news/health/se…
World's largest genetic study of ME offers hope to sufferers. Chris Ponting on @Channel4News on how #MEcfs is 20 years behind other diseases because society doesn’t take it seriously. @DecodeMEstudy trying to change this w PwME. youtu.be/3bPNjc4dRRs?si…
Really good to receive the latest issue of “Breakthrough” from @MEResearchUK There’s some really good #ME #MEcfs research currently taking place at @GriffithUniVC @mecfsbiobank @DecodeMEstudy @OxMEDiscovery ++ Thanks to all who are working hard on this #MEdTwitter #pwME
Today is 7-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial Free researchgate.net/publication/31… #MEcfs
It's 7-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe. journals.sagepub.com/doi/full/10.11… #MEcfs #CFS #MyalgicE #CBT
6/ A reminder that Dr Speight is coming to Ireland in May: x.com/irishmecfsasso…
6/ A reminder that Dr Speight is coming to Ireland in May: x.com/irishmecfsasso…
Thank you @GeorgeMonbiot for this fair & accurate comment piece. NB. There are no official prevalence rates for this disease in any country. The estimated UK figure of 250,000 patients is outdated & pre-Covid so the number is likely to be far higher now. theguardian.com/commentisfree/…
1) "As the MedUni Vienna research team shows, #MECFS patients can be divided into subgroups based on the function of their immune system. As part of this classification, the study was able to detect different biomarkers in those affected, which indicate biermann-medizin.de/biomarker-fuer…
Remembering ME activist (& my friend) Robert "Bob" Courtney, who passed away on March 7, 2018 This is from the @MEAssociation magazine One can read about some of the specifics of Bob's work here: me-pedia.org/wiki/Robert_Co… #MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #ME
Tom Kindlon @TomKindlon
14K Followers 579 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.
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...
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.
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 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
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
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.
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.
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
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✨
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
ME Association @MEAssociation
20K Followers 2K Following We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RTs do not necessarily mean endorsement.
#MEAction Network @MEActNet
20K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Todd Davenport @sunsopeningband
11K Followers 5K Following Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Storyteller involving data. “That brand of person.” Full prof. DPT PhD MPH OCS.
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
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
Sarah Wilkinson @sarahwilko372
12 Followers 164 Following Honors student Psychological Science@SCU on the Gold Coast
Shosha Capps 😷🎨.. @shoshacapps
280 Followers 3K Following Appalachian expat academic adjacent #environmentaljustice #disabilityjustice #COVIDisNotOver Caregiver to twin toddlers and/with #PwME
Yuen Chan @xinwenxiaojie
29K Followers 1K Following Hongkonger, South Londoner. Journalist, educator. Senior Lecturer, @cityjournalism. Formerly 打雜 for 中大張佬花記. "at"https://t.co/bPUT8Q8vGz @[email protected]
Hope found in M.E.�.. @hopefoundinme
1K Followers 1K Following 💒 Faith, Hope & a Power Chair Christian, Blogger #pwME c2004 #MEcfs part of my life, not all...it tries! 🌦 Nazareth Companion • Published by @thisisliveart
Terry Fortesque @FortesqueTerry
541 Followers 1K Following
Sara CuppaTea @EndoButterfly
2K Followers 2K Following 💛🎗Endometriosis Warrior🎗💛 💜 💪Fibromyalgia Fighter 💪💜
may_talks_a_lot @Mayz131
1K Followers 2K Following May, 26 🙋🏼♀️ Lived with anorexia for far too long - she’s definitely outstayed her welcome. 😖 Muddling through recovery and life 🥲💪🌈Autistic & ADHD 🌈
NHS woman @NhsWoman
1K Followers 2K Following Sex not gender. Fighting to help my daughters with Long Covid (4 years). Politically homeless. Good egg.
Pathogen Hunter @lymehater
837 Followers 5K Following Lyme disease advocate, tennis player, biomedical researcher, skier, reader, gourmet cook, antique hunter, world traveler, geek with varied interests.
Canadian gymnerd @canadiangymnerd
156 Followers 1K Following Gymnerd since before Shannon Miller was hungry and angry. Competed trampoline and double-mini for team Canada back in the day, and I love dogs.
𝐏𝐚𝐮𝐥𝐚 @paulaohana8
665 Followers 4K Following Someday I will write poems about this. But first I must survive it.🪽 Lora Mathis ♡ ☾ ✧ ❀ ✧ ☽ LYME & CO'S | MCAS | ME/CFS | FM | and more🥀
fhronesis @fhronesis
338 Followers 2K Following #MECFS #EM😶🌫️ Sujet manquant EM = Encéphalomyélite Myalgique PEM/MPE= Malaise Post-effort
rob @rob__i
2K Followers 2K Following PhD since 2016 Ill since May 2021 Recovery log: https://t.co/ccKnFAcEvJ
Linzi @linzi_mcintosh
375 Followers 5K Following Mother of multiple disabilities including Hypermobility, fibromyalgia, to mention a few. All daughter health struggles. EDS. Autism. Gillian Barre' syndrome
Yann (ME/LC Research .. @yann_mecfs
101 Followers 63 Following Very severe ME/CFS (Long Covid). Not always able to use phone. Bedridden/unable to speak. #LongCovidMoonshot
Emily Mae C @maethefourth_
470 Followers 648 Following chron(iconic)ally sick, one hip wonder & ND | Chair of @ndin_law | ICCA Bar Student | Harmsworth Scholar (2023) | I talk a lot
OMFCharityMugs @BFWoodburn
10 Followers 170 Following Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵
Maddy Corper @BRtractordriver
44 Followers 118 Following Mother, wife, locomotive engineer, singer, learner bass player, long hauler/pwME and amateur virologist!!
Janet @Janet37960092
40 Followers 2K Following
Patricia Paulson @Patrici08602408
0 Followers 4K Following
Bee @Claire_Brownie
79 Followers 423 Following
Meder Omuraliev @meder_o
1K Followers 5K Following Software Engineer into Medicine, Sports, History, Anime, Immunology, Microbiome/Health, Movement/Posture, Weightlifting, Clean Air
Whitney @WhitNeedsANap
203 Followers 3K Following Living in a world of pain. She/her. #Fibro #MECFS #CPTSD #Depression #Anxiety
Lou @loulabelleHK
206 Followers 2K Following #pwME since 2020 | stuck in a venlafaxine tapering hell haze | lover of cats/animal/funny videos or anything else that makes me belly laugh
Izzy Wightman @izzy_wightman
106 Followers 1K Following Writer, researcher, journalist... when well enough. Living with Long Covid.
Renate-new account�.. @Renate834601
83 Followers 423 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Claire Hirst @claire_hir24347
20 Followers 111 Following Raising awareness and charting my journey with ME/CFS
debby @schoorheus
7 Followers 130 Following
Daphné Lamirel (she/.. @DLamirel
311 Followers 1K Following Project Officer for #publicinvolvement @AlzheimerEurope.
Teri ☘️💙♿️ @mettlesome_teri
37K Followers 31K Following Disabled/Disability activist|Political blogger|Tories out|Climate change|Socialist|Retired|Trans ally 🏳️⚧️Support me on https://t.co/4KTsGpcK4F
Georgina coker @Georgina19000
186 Followers 324 Following BSC hons, psychology, sociology, economics & soc. history. University of Leicester. #ME #CFS. #Fibromyalgia. Small nerve fibre #peripheral neuropathy.
Mary Broadbent @Mary2bOptim
31 Followers 63 Following Person with M.E. and advocate. Ex Positive Dog Trainer before becoming more seriously ill in June 2022.
Emilio Baztarrica Nav.. @EmilioBaztarri1
106 Followers 92 Following
Sam @Sam892726440461
0 Followers 32 Following
Heather Powell @Heather12494699
359 Followers 4K Following The introduction to the new economic system
Charlotte @CharlotteClarkW
31 Followers 246 Following Blogger | Family History | ME Advocate #pwME #Fibromyalgia #breastcancer Mostly housebound. Lover of old things. Auntie to a multitude. List maker.
Rachel 44 @RachReynolds510
91 Followers 811 Following ME/CFS/Long Covid campaigner |Coeliac awareness| Get Tories Out
Jane Taylor @jmdtaylor1
1K Followers 2K Following Mother, feminist, academic, patient involvement in research advocate. Trustee at @WeAreArma and @VersusArthritis. Education, Politics, Living with #MLTCs
Ntisec 𓆣 🏴 @ntisec
4K Followers 5K Following Doodzieke zorgmijder. #LongCovid 03-2020 #MECVS sinds 1998, pas diagnose per 01-2021. Daarvoor gaslighting/psychologisering. https://t.co/2Etyd4GLo2
Carolyn Leary @CarolynLeary
60 Followers 349 Following
Toni Ayres @tayresmft
4 Followers 144 Following
ME-bevakning-sverige @MebevakningSE
9 Followers 153 Following funktionsrätt, ME-info, bevakar nyheter om myalgisk encefalomyelit, vården, vårdvåldet, forskning och välfärdsfrågor. ME information Sweden 🇸🇪
Abolition @forAbolition
0 Followers 2K Following
Ryan Extraterrestrial.. @RyanE_T_
244 Followers 1K Following B.A. Psychology Environmental conservation. Anti #celebritygossip Less material, more thought #millionsmissing Living with #disability, #ableism must end #BIPOC
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.
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]
Tom Kindlon @TomKindlon
14K Followers 579 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.
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...
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.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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]
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
Anil van der Zee © @AnilvanderZee
9K Followers 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
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
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.
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 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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.
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
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✨
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
Visible @visible_health
5K Followers 134 Following The activity tracking platform for illness, not fitness. #MECFS #LongCovid #invisibleillness
Caroline Wright @caraswrong
776 Followers 2K Following #pwME, disability rights campaigner, climate crisis campaigner
Neurologist Mom @NeurologistMom
5K Followers 264 Following A neurologist, M.D. a mother of a 15-year-old girl with severe neuroCOVID/ME/CFS who has been managing her daughter's treatment at home since October2022
Rebecca Ryan @DrRebeccaRyan
1K Followers 1K Following Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS and hEDS.
Harry Boby @HarryBoby4
3K Followers 60 Following I care about Philosophy, Health, and ending Long Covid & ME/CFS. Recovery videos & more⬇️
Scott Daniska @scott_scientist
243 Followers 212 Following Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together! #ChronicIllnessAwareness
Danielle Beckman @DaniBeckman
24K Followers 6K Following Neuroscientist 🇧🇷 at the @CNPRCresearch working with primates. I like taking pictures of weird things happening in the brain 🧠🔬. #NeuroCovid is real.
Yanto Evans @GarethEvans1977
227 Followers 305 Following Trustee of the Long Covid Support charity. pwLC since April 2020.
Caroline Ströck @CarolineStroeck
723 Followers 114 Following marketing artist at Ströck • RINGANA ambassador • fundraising for @weandmecfs foundation • spreading awareness for #MECFS •
Ror Preston @RorPreston
2K Followers 555 Following Lead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | #MECFS since 2018 | Own Opinions
Başar SARIKAYA @basarsarikayamd
3K Followers 1K Following Associate Professor of Neuroradiology, University of Washington, PGY-24, G93.32
Dr Rebecca Healey @beccyjanehealey
2K Followers 1K Following NHS Doctor on pause #LongCovid | Registered Nutritionist (Public Health) | #CovidIsAirborne | We need #cleanair yesterday.
Miriam Merad, MD, PhD @MiriamMerad
16K Followers 468 Following Director, Immunology Institute @SinaiImmunol @IcahnMountSinai | Harnessing the innate immune system for novel therapies against cancer & inflammatory diseases.
Michal Tal, PhD @ImmunoFever
13K Followers 10K Following Immunoengineer @MITdeptofBE captivated by #inflammation, #SexDifferences #Lyme, #COVID, and planetary health. prev/ @Yale, @Stanford. @immunofever.bsky.social
Dr. Sabine Hermisson @SabineHermisson
5K Followers 2K Following PD Dr. (empirical education research, religion) mother of Mila who suffers from very severe ME/CFS (Bell 0) M: @[email protected]
Sharon Cohen @SharonC97936831
813 Followers 4K Following #TwitterHaiku; Tulane MBA; LSE; Univ of Wisc Mad; former career financial services; international bus. #chronicillness; #physicaldisability.. 4 NIH studies
Jo Greer @DrJoGreer
880 Followers 2K Following Educational Psychologist. Personal account. All views my own.
Yulia Navalnaya @yulia_navalnaya
369K Followers 1 Following
Marco Wetzel (is figh.. @Gmwetz
2K Followers 836 Following Founder of @U2Fight_world // #UniteToFight2024 // #LongCovid and #MECFS advocate // #longcovid patient
Metrodora Foundation @MetrodoraFdtn
367 Followers 414 Following Catalyzing scientific collaboration and discovery to find cures for chronic, multisystem disorders.
Lisa McCorkell @LisaAMcCorkell
6K Followers 2K Following @patientled cofounder | #longcovid patient-researcher/advocate | disability justice policy nerd | MPP | she/her | natures 10 2022
Ellie Fry @iEllieFry
3K Followers 1K Following Deputy Online Features Editor @DailyMirror | Previously @Independent | Contact: [email protected]
Helen Goss @HelenMMGoss
2K Followers 953 Following 🏴 @longcovidkids ❤️🔥 Parent/carer #LongCovidKids 🤘🏼 Advocate #LongCovid 🐾 Cat spam 🪐 Space nerd 🌪️ Chronically persistent force of nature
Alec Finlay (dailies).. @Dailies54153708
1K Followers 3K Following (mostly) a daily poem by poet and artist Alec Finlay. Twitter feartie. https://t.co/oZOKaiSH3m
Herberto Dhanis, PhD @HerbertoDhanis
2K Followers 320 Following Biomed. Eng. and PhD in Neuroscience @EPFL_en | Interested in autonomic dysfunction in alpha-synucleinopathies and in #LongCovid | creator of @LC_ontheshort
Rob Wüst @RobWust
6K Followers 772 Following Assistant-Professor Muscle Metabolism at Vrije University Amsterdam, Netherlands. Interested in skeletal muscle function in health and disease
Marit Hjelsvold @memhj
567 Followers 614 Following #MyalgiskEncefalomyelitt G93.3 #MEcfs #PwME 2003 #Research 😍🧐 #Kritiker #Analytiker #Naturviter Master1997 /Norwegian University of Life Sciences @UniNMBU
Toby Richards @TobyRichardsUCL
4K Followers 2K Following Professor of Surgery, interested in clinical trials, collaboration and challenging opinion: Triathlete and wine enthusiast. Views (often strong) my own
Mark Faghy @DrMark_Faghy
5K Followers 845 Following Prof Clin Ex Sci @Derbyuni Research in #longCOVID. Vice chair @LongCOVIDPhysio, advisor for @LongCovidKids and @long_covid. Accredited @ClinExPhysUK & @BASESuk.
MGH Martinos Center @MGHMartinos
6K Followers 228 Following The Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital develops and applies innovative biomedical imaging technologies.
Rae @Sunny_Rae1
12K Followers 2K Following Dr Rae Duncan MBChB,BSc(HONS), MSc,MD,FRCP, SCMR3,BSE TTE/TOE Accr. Consultant Cardiologist & Long Covid Researcher. #TeamClots #LongCovidKids #WHN.Views my own
Manuel Ruiz @manruipa
4K Followers 135 Following 🔬Diving deep into #MECFS & #LongCOVID research. 🦠Dual role: Researcher and EBV ME/CFS patient. 🌍 Seeking answers.
ANKE WEIN @Anke20707586
1K Followers 1K Following former dedicated teacher, pianist, trombonist, runner, hiker and yogi -now nothing left due to the debilitating illness #MECFS (#longcovid, #pwME) Please see us
Larissa Fan @LarissaFanTO
1K Followers 993 Following Artist, writer & #pwME. Author of Ten Little Dumplings. She/her. Tweeting about #ChronicIllness & books. Mastodon: @[email protected]
Leonora (Leo) Gunn @LeonoraGunn
445 Followers 2K Following Philosophy of disability PhD candidate @WRoCAH @CDSLeeds @LeedsPRHS. Working with @chronicinclude. Book hoarder. She/her
Trialblazers_MECFS @Trialblazers_
36 Followers 40 Following Aiming to set the spec for a trial of drugs (currently used for other conditions) to see if they work for ME/CFS & LongCovid
Loucedia69 🦝 @LouCedia69
2K Followers 2K Following Favourite quote - 'Earth provides enough to satisfy every man's needs, but not every man's greed'.
Louise Kenward @LouiseKenward
3K Followers 4K Following MOVING MOUNTAINS | Writer @PortyLiterary | Psychologist @ZebraPsych | Artist | PhD @PlaceCentre Romney Marshes & post-viral Illness @instability_env | #DP100 23
Post-Viral Trials New.. @postviraltrials
4K Followers 157 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.
Katie Johnstone @SockFoam
740 Followers 718 Following She/her. Chronically ill with ME. Founder of the ME/CFS Medical Education Campaign, blogger on Substack.
Kristina Osobka @ChronicallyTina
1K Followers 2K Following Founder of the ROCK ME Project. Wife, Cat mom, Author, Advocate, and medical DUMPSTER FIRE. Living life one SPOON at a time.
Angela Woods @literarti
5K Followers 2K Following Director @DurhamIMH & Discovery Research Platform for Medical Humanities @durham_uni | Also: @hearingvoice @the_polyphony @ReadEnglish | Same handle on BsKy
Dr. Kirsty Liddiard @KirstyLiddiard1
6K Followers 5K Following Sociologist and Senior Research Fellow researching disability, gender, sexuality and children and families. All views my own. She/her.
Prof. Andrew Power @power_geog
1K Followers 1K Following Professor of Human Geography, University of Southampton. Interests in disability, personalisation, social care, welfare & rights. #SelfBuildingOurLives project
Cinzia Greco (@cinzia.. @Cinzia_Greco_
1K Followers 1K Following Medical Anthropology and Humanities, U of Manchester, @MancHSTM | Co-Editor-in-Chief Anthropologie&Santé https://t.co/CEscNUkYFQ
china mills (she/her) @chinatmills
3K Followers 2K Following Welfare state violence, global mental health, disability justice. Leads the Deaths by Welfare Project @DeathsbyWelfare @HJusticeLdnWe desperately need a protocol for hospital admissions/ 'hospital at home' for severe ME, and POTS. Too many people being mistreated/ disbelieved and conditions are not conducive to wellbeing. Hospitals should at least follow NICE guideline #SaveCarlasLife #ExposeMENow
After all the corruption we've seen from the Tory party and everything they've done to bring our NHS to its knees, Sunak dares to suggest it's the sick who can't work who are the problem? The very people he and his party have let down so badly? The sheer nerve of it.
"We can't allow fraudsters to exploit the natural compassion and generosity of the British people." PM Rishi Sunak announces there will be a crackdown on fraud as part of his 'moral mission' to reform the welfare system trib.al/h9GAtkH 📺 Sky 501
There is no such thing as “a sick note culture.” There is a record high NHS waiting list, crippling housing costs, widespread food poverty, stagnant wages and inadequate benefit rates, a broken social care system, dire mental health services, and closed Sure Start centres.
I'm incredibly excited about our analysis of the massive omics data we've collected from #MECFS patients over the past 6 years. Just wrapping up our latest paper, about the links between immune parameters, metabolomics, & symptoms. I think it’ll make a major impact in the field😊
My message about the treatment of Severe ME patients in NHS hospitals: patients, families, carers feel stuck between a rock and a hard place. #SaveCarlasLife #ExposeMENow
A big shout-out to foundations like @POTSActivist, Balvi Research Foundation (@VitalikButerin) and @polybioRF for funding research. These foundations play a fundamental role in patient advocacy and in supporting novel “blue sky” hypotheses.
We are excited to announce that we have been funded by standinguptopots.org to study POTS (with/without LongCOVID).We will seek to understand coagulation dynamics and to characterize microclots and inflammatory molecules within them. @dbkell @BinitaKane Greg Lip @POTSActivist
Another crowning achievement for an extraordinary human. Congratulations, @VirusesImmunity! So honored to know you. The best part is how much more incisive work you are continuing to do; you also honor so many of us with your commitment and continued contributions. ☮️
TIME's list of the 100 Most Influential People in the world is out. I'm honored, delighted, and grateful to be a part of this incredible group #TIME100 🙏🏼🙏🏼🙏🏼 @TIME time.com/6964230/akiko-…
Congratulations, of course, to all the recipients but a very special recognition for @JoanMcparland (seated photograph) for all the work she has achieved with @hope4mefibroni on raising awareness of #MyalgicEncephalomyelitis 💙
A very special afternoon @HillsCastle, the Royal Residence in Northern Ireland as Belfast and NI recipients received honours bestowed on His Majesty's New Year list. Huge congratulations to each of you. Have a wonderful day. 🌟💐👏
📢 Exciting news! Lucy Cavendish College's 2024 #FictionPrize longlist is here! 📚 16 brilliant debut #novels – could your next favourite read be on the list? Congratulations to the authors! Find out more ⬇️ lucy.cam.ac.uk/news/fiction-p… @PFDAgents
1/6 Yesterday I did a thread on #BringMillieHome & #SevereME Some people commented on my proposal that UK ME orgs shd, in coalition, create/fund a Crisis Team for cases such as Millie's. The orgs have cash reserves; this is one way they could be put to good use. Detail follows 🧵
9/ The above proposal for a charity-funded crisis team should be considered (or reconsidered, if they have previously done so) by a collaboration of eg. @MEAssociation @actionforme @MEActNetUK. #BringMillieHome highlights the need for this yet again. Thank you for reading. END 🧵
8/ Like many before me - and, no doubt, many yet to come - I am utterly disheartened/burned out by years of trying to address this problem. However, a summary of my thinking & proposals for tackling these issues is in the link below. valerieeliotsmith.com/2022/03/16/a-m…
7/ Bigger picture: it must be accepted that the international #ME patient community has yet to change an entire culture and worldview. Fighting individual fires (such as Millie's) does not change entrenched attitudes and prejudices in populist/media/medical cultural thinking.
6/ Beyond this case: the #ME charities shd use some of their combined reserves to fund & set up a crisis team for just this kind of situation which happens all too often. Yes it would be quite a complicated process but it shd have happened years ago (it's a mystery why it hasn't)
5/ Apparently, Millie/her family have a lawyer although it's not clear for what purpose. It is to be hoped that it is someone familiar with ALL available legal options and with the challenges faced by far too many patients like Millie with #SevereME
4/ So what needs to happen now? According to social media, Millie is subject to Deprivation of Liberty Safeguards (DoLS). IF this indeed is the case, then the route for appeal is to the Court of Protection. Legal advice/representation would be required.
3/ As a result, Millie & her family are being subjected to a nightmare set of circumstances all too common in this kind of situation where the illness is not given essential life-saving credence/treatment. NB: my knowledge of this case comes solely from public social media posts.
2/ The 2021 NICE guideline for this illness references the need for tube-feeding in cases such as Millie's. However, #ME, especially in its severe form & particularly in young women, is an illness which inhabits a world of widespread cultural and medical ignorance and prejudice.
#BringMillieHome 1/9 🧵 There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.
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