PostAcuteCovid19Syndrome @PostCovidSynd
Going viral since 2020. Representing the 1 000 000 unheard voices https://t.co/mgdVpuZ797 https://t.co/fhdyPi1jfR Global Joined July 2020-
Tweets2K
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Following256
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#PACS #LongCovid #Longhaulers Please sign and share for longhaulers. change.org/dyingtoliveaga…
well done to all those who campaigned in the US for this.
well done to all those who campaigned in the US for this.
'Long Covid' Will Be Covered by Federal Disability Law, Biden Says - The New York Times. This should immediately be applied to ME/CFS patients without having to send enormous amounts of documentation and medical letters of support. @JoanMcparland nytimes.com/2021/07/26/us/…
I have no more information than this - but it is great news @newhealthpsych @davidtuller1 @AnilvanderZee
I have no more information than this - but it is great news @newhealthpsych @davidtuller1 @AnilvanderZee
The same researchers keep getting bad results for cognitive behavior therapy in treating "medically unexplained symptoms" but they always find ways to put a positive spin on them: virology.ws/2021/07/03/tri…
The flawed PACE trial claimed 22% recovery - using CBT and GET treatments for ME/CFS: Yet data from 6 NHS clinics, including their own treatment centres, shows CFS patients report v.poor physical function post-treatment. ncbi.nlm.nih.gov/pmc/articles/P…
THIS
“There is no somatic cure for #MECFS, therefore only cognitive therapies are available” is a false dichotomy. There are many illnesses that we cannot cure. It does not imply that we should treat them with psychological interventions. – Dr. Joar Halvorsen x.com/joarhalvorsen/…
“There is no somatic cure for #MECFS, therefore only cognitive therapies are available” is a false dichotomy. There are many illnesses that we cannot cure. It does not imply that we should treat them with psychological interventions. – Dr. Joar Halvorsen x.com/joarhalvorsen/…
Half of IAPT Clients Attend Only One Treatment Session cbtwatch.com/half-of-iapt-c…
At the time he was ordering the British people not to hug anyone from other households… 👇
"I learnt that I could change the symptoms I was experiencing with my brain...I suddenly believed I would recover completely" "I have recovered...by understanding that our unconscious normal thoughts & feelings influence the symptoms we experience" 🤔 thesciencebit.net/2021/01/29/bew…
Beware! Radio4 one o’clock news about to have ‘Professor of Medicine who had #LongCovid talking about how thinking positively can combat disease’ #ME .
More of this is the U.K. please. Less of the ‘think yourself better’ stuff that @KingsIoPPN have been churning out for decades, harming patients. #LongCovid #medtwitter
More of this is the U.K. please. Less of the ‘think yourself better’ stuff that @KingsIoPPN have been churning out for decades, harming patients. #LongCovid #medtwitter
@DaveLeeERMD @TinyWriterLaura Same old. Deny chronic post viral illness and relabel it as psychogenic no matter how debilitating the symptoms. What I find most upsetting is the number of LC people who are ME/CFS deniers, despite meeting the CCC. Giving it another new name is the *CFS* debacle all over again.
Happy Suffolk Day facebook.com/34890399514201…
E muito interessado. #longcovid #postcovidsyndrome #longhauler multinews.sapo.pt/atualidade/cov…
Another unblinded CBT trial from Chalder, who is known for her methodologically-disputed work on CFS, finding no effect on primary outcomes among people with "medically unexplained symptoms." Some effects are observed on secondary outcomes, but... 1/
Another unblinded CBT trial from Chalder, who is known for her methodologically-disputed work on CFS, finding no effect on primary outcomes among people with "medically unexplained symptoms." Some effects are observed on secondary outcomes, but... 1/
Covid Solidarity @CovidSolidarit1
13K Followers 4K Following We are people, not numbers. Across the world 🌎 “Alarm bells only ring in the ears of the powerless.”. “Normalisation is the disguise of complacency.”
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]
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
Sara #FBLC @Sarasearching
3K Followers 2K Following Nov'20 I was fit, healthy & ran 50miles for charity that month...then bed/housebound for 19mths #LongCovid Re-infected June'22 & Feb'23 🙏 #LongCovidHope 💛
Dr Nicola Clague-Bake.. @ClagueNjc36
4K Followers 2K Following Physio @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/fatigue/healthy lifestyles/mental health/ME/Longcovid/EDI/all views my own she/her
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 Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
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
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
Mark Vink, MD @Huisarts_Vink
2K Followers 522 Following Huisarts n.p. en verzekeringsarts n.p. (genomineerd voor 2016 John Maddox Science Prijs). Truth about #MEcfs #PACEtrial sounds like Hate to those who Hate truth
Simon McGrath #mecfs @sjmnotes
4K Followers 243 Following Been ill for a while. Mostly ME/CFS biomedical research and news
Letha Cokely @let_coke
16 Followers 2K Following
Emmi Lindall @EmmiLindal36575
85 Followers 5K Following
Cathey Raborn @RaboCath
85 Followers 5K Following
Rhiannon Scheumann @rhian_scheum
68 Followers 5K Following
Dalia Lettieri @DaliaLetti94079
31 Followers 5K Following
AMACOP 🇬🇧🇺�.. @covid_madrid_e
134 Followers 244 Following Madrid Long Covid Association AMACOP Advocacy, Research, Treatment and Rights for #pwLC ✉️ [email protected] En español @covid_madrid
Jacobine van Strijlan.. @JacobinevanStr1
2 Followers 52 Following
Robertogidra @robertgidra
52 Followers 43 Following
Frau𝕏ausNRW @FrauXausNRW
2K Followers 1K Following MomOf2 mit #LongCovid #MECFS #POTS #SFN - Werde 2024 (vielleicht) gesund ! #UniteToFight2024
Miya Reynard @MiyaReynar
42 Followers 5K Following
Jo @Jo64281966Jo
0 Followers 174 Following
Heather Travis, she/h.. @heathertravi
14 Followers 457 Following MA in Community Health, Teacher, Learner, Mom, Carer, passionate about all things health and education.
Helenfan88 @Helenfan8837111
3 Followers 40 Following
BeanyYNWA @BeanyYNWA1
19 Followers 50 Following
Augusta Selan @AugusSela
54 Followers 5K Following
“Popo” John Popol.. @poposloppo
934 Followers 722 Following Psychology & Conspiracies Teacher/Senior Class Advisor/Put on Notification & Retweet☄️ “Master YOUR Day! “Blessed by @PASTOR__WEST/Tweets are my OWN!
Kpb @BoughtflowerK
16 Followers 438 Following
Mr Wiking88 @MrWiking88
175 Followers 538 Following Love to play Destiny 2 with friends but i hate Bungie alot
Stella Hornby 💙 @HornbyStella
2K Followers 4K Following Consultant Ophthalmologist Views my own & not those of my employer. Qualifications Lots & not born yesterday
Reborn Black @nekessa
2K Followers 4K Following Covid Cautious. 😷#LeaveMeAlone Kisumu in Minneapolis. Comms director @bajitweet + Cofounder @mnbictweets
Baron_A @cakelady285
43 Followers 161 Following
Doc Scrubs @Doc_Scrubs
537 Followers 843 Following Witnessed the downfall of civilization and all I got was this lousy X account... well, and now a BlueSky acct too (@docscrubs.bsky.social).
[email protected].. @Barb79inoz42833
0 Followers 10 Following
Tabea Kloos @tabeakls
99 Followers 417 Following Clinical Psychologist | Pain Research | Post-COVID Rehabilitation | PhD
The End Of Days: Swea.. @TheendofdaysB
4K Followers 5K Following ⛔️NO Bloody DMs or you’re blocked ⛔️ Unite Member #ISupportACeasefire #FuckTheTories #PostCovidSyndrome #WearAMask #LiarSunak #SaveOurNHS #GeneralStrike #Rejoin
Elizabeth Smith #FBLC.. @IssyDublinNewAC
201 Followers 1K Following Long Covid long-hauler since January 2021 ❤️ #POTS. Advocate for Long Covid. Management Consultant @EY Animal Welfare Volunteer @Assisi Animal Sanctuary🐈
Tess @Tesslafun281
711 Followers 3K Following Airborne BSL3 SARSCoV2 is thriving. N95 Mask Up. Clean Air. Prosocial. Disabilities. Chronic Illin’. Waysider.
Jo-Jo @postcovid_jojo
42 Followers 93 Following Severe MECFs after Covid Infection / schwere MECFs nach Corona Infektion 🤧🍀✌🏼 #postcovid #mecfs Gesundheit ist das größte Geschenk 24 Jahre alt
annabellegettingwell @annaLifeLine
0 Followers 31 Following I had "the virus" November of 2020. Since then, I was diagnosed with Stage IIB ovarian cancer, brain fog, stroke and vestibular migrain
Mike Donnino, MD @mdonnino
2K Followers 1K Following Physician-scientist, Beth Israel Deaconess Med Center Prof. of Med & Emergency Med, Harvard Med School Resus: https://t.co/vmhTPb4cJs Mind: https://t.co/E1fx8xkeSb
dr s vijay anand siva.. @upon98
3 Followers 114 Following
Ella @EllaM1337
77 Followers 171 Following Physiotherapist, former dancer , post/long-covid warrior, BTS Army. “no storm last forever”
Victoria @Hoopvic
507 Followers 4K Following Fighting for my amazing #ASD #SPD #EDS #FND #ADHD daughter who “just wants to be me”. European. ❤️ my greenhouse. Flower grower.
Indy @GeorgeInJersey2
59 Followers 91 Following
Salomé Liebenberg @Salome_65
307 Followers 2K Following
Lilly - You know it �.. @Lillyouknowit
1K Followers 2K Following That tree falling in the forest. Highly political at the moment. Always trying my best to be kind.
Paul Fox @Rocket_Snail
283 Followers 604 Following
Ramona J. Heim @RamonaJHeim
137 Followers 370 Following ecologist | #tundra #fire #wetland | postdoc @uni_muenster
Martine Middelburg @MartineM1972
197 Followers 326 Following Long Covid/Post Covid syndroom ~ 12-11-2021 Hobbyist Phoneographer & Poet. Nature & Animal lover. Creative soul. My dog Seff. 🖤
Karolin v. Korn @KarolinKorn
5 Followers 55 Following Physiotherapy, OMT, chronic pain, pain neuroscience education
Jackie Katsianas @JackieK_
833 Followers 2K Following Technical program lead in fintech. Parent and pet owner. Lifelong learner. Atheist and trynnabe Stoic. Pro-choice pro-vax pro-science pro-democracy anti-cults
Shaney Wright @ShaneyWright
15K Followers 493 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
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.
Covid Solidarity @CovidSolidarit1
13K Followers 4K Following We are people, not numbers. Across the world 🌎 “Alarm bells only ring in the ears of the powerless.”. “Normalisation is the disguise of complacency.”
Resia Pretorius @resiapretorius
27K Followers 218 Following Distinguished Prof: Physiological Sciences, Stellenbosch Univ, South Africa; Honorary prof: Univ of Liverpool Research: coagulation, inflammation
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
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
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]
Janet Dafoe @JanetDafoe
15K Followers 221 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...
Tom Kindlon @TomKindlon
14K Followers 576 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
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 205 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.
Patient-Led Research .. @patientled
27K Followers 612 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Long Covid Kids - #Lo.. @LongCovidKids
30K Followers 4K Following UK-based, international charity supporting and advocating for families and children living with Long Covid & related illnesses. https://t.co/QjkCJVG3tI
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.
Sara #FBLC @Sarasearching
3K Followers 2K Following Nov'20 I was fit, healthy & ran 50miles for charity that month...then bed/housebound for 19mths #LongCovid Re-infected June'22 & Feb'23 🙏 #LongCovidHope 💛
Prof. Akiko Iwasaki @VirusesImmunity
220K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII President of @ImmunologyAAI
Jonas R. Kunst (@kuns.. @KunstJonas
17K Followers 723 Following Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Founder @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
Hillary Johnson: jour.. @oslersweb
4K Followers 947 Following The Why "Delicious" "Devastating" "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose."
Marianne Faithfull @Faithfull_M
17K Followers 65 Following ‘Kissin' Time’ is out now! More info here: https://t.co/LAUJpNGwBw
nadia sawalha @nadiasawalha
179K Followers 984 Following With more good than bad in the world, let's shine a light on the good & bring some brightness to our day! Co-author of Honey I Home-Schooled The Kids!!
Kerry Newnham @Squashedhedgi
1K Followers 942 Following Tube-fed, bedbound, a very severe M.E. veteran, wounded on the battlefield. Unlikely to come out of this intact or alive. UK has allowed ME neglect. LW-green
James Tapsfield @JamesTapsfield
9K Followers 2K Following Political Editor for MailOnline. But it doesn't necessarily agree with everything I tweet
GB News @GBNEWS
625K Followers 62 Following LIVE now: Sky 512, Virgin 604, Freeview 236, Freesat 216, YouView 236, Samsung 4326, Sky Glass 509, DAB+ Radio, GB News App, YouTube, Online.
Dr David Cox @DrDavidACox
4K Followers 562 Following Freelance health journalist @guardian, @Telegraph, @WIRED, @TIME & others. Former @Cambridge_Uni neuroscientist.
KarenPhysioCoUk @karenphysiocouk
4K Followers 2K Following Neurological physiotherapist with https://t.co/3BfNtxTDCW working with conditions affecting brain, spinal cord and nervous system / Co-founder @PhysiosForME
Shirley Ballas @ShirleyBallas
99K Followers 135 Following Official Twitter account. Global coach for dancers around the world. Head Judge on @BBCStrictly. President @ISTDdance ✨ Management: @AshleyVallance @InterTalent
Avril Washington 💙.. @avriljw
646 Followers 781 Following Consultant Paediatrician, Looked After Children, fostering and adoption. Proud mum. Christian. Living with #LongCovid. Opinions my own. #TreatLongCovid
It's M.E. Linda 💙 .. @HappyHoundHouse
2K Followers 3K Following 2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. Brain/fitness 'not what it used be'. Beloved Lisnakill Myles-Happy Hound himself🌈 💔
Tilman Andris @TilmanAndris
3K Followers 5K Following Philosophy graduate | former science event organiser | former performance artist | ‘former’ and ‘ex’ at most of everything due to #MEcfs
Millions Missing Podc.. @millionspod
1K Followers 415 Following Share your story / Amplifying the chronically ill / #MyalgicEncephalomyelitis / #LongCovid et al / #MillionsMissing / Contact: [email protected]
FraudListing @FraudListing
1K Followers 1K Following Redditors against pseudoscience | Fraudlisting is about exposing unproven and nonscientific treatments for myalgic encephalomyelitis (including Long Covid)
James Corden @JKCorden
10.4M Followers 2K Following Sometimes it’s James, sometimes it’s the @latelateshow digital team. We dont read DMs. x
Stephen Fry @stephenfry
11.9M Followers 45K Following Twitter account of Stephen Fry reactivated to prevent impersonation accounts.
John Bishop @JohnBishop100
3.4M Followers 540 Following I have not eaten meat since the 80's. husband, father, animal lover.
Chris Moyles @ChrisMoyles
3.4M Followers 250 Following The Chris Moyles Show, weekday mornings on @RadioX
Jimmy Carr @jimmycarr
6.6M Followers 481 Following My new special Natural Born Killer is out now on @NetflixIsAJoke. Get tour tickets and more here 👇
Chris Evans @achrisevans
2.1M Followers 229 Following Host of The Virgin Radio Breakfast Show with Sky, creator of CarFest, custodian of 500 Words. But mostly punching way above his weight in the marriage dept.
Vernon Kay @vernonkay
1.1M Followers 3K Following
fearne cotton @Fearnecotton
6.5M Followers 554 Following Mum/wife/Broadcaster/founder of happy place
Amanda Holden @AmandaHolden
2.0M Followers 1K Following • Wife & Mama 💁🏼♀️ Actress • Judge @bgt • Presenter @thisisheart • Singer @emirecords • ‘Songs From My Heart 👇🏼
Davina McCall @ThisisDavina
2.7M Followers 1K Following hi I’m me , a work in progress https://t.co/TlQuUJRXdf 📍 https://t.co/v6s2hyDOM1
Phillip Schofield @Schofe
4.3M Followers 11K Following I don’t tweet anymore or check my @‘s sorry. thanks for all the fun originally though xx
Eamonn Holmes OBE @EamonnHolmes
1.2M Followers 9K Following TV Presenter, Columnist, Trustee @MU_Foundation, 43 years of Television and Radio presenting & counting 😀Anchor Breakfast with Eamonn & Isabel GB News
Holly Willoughby @hollywills
7.1M Followers 279 Following 📺 Broadcaster 🌙 Founder of Wyldemoon 💁🏼♀️Brand ambassador for Marks & Spencer and Garnier. 📚Author of ‘Reflections’
Ruth Langsford @RuthieeL
644K Followers 2K Following 💁🏼♀️Presenter on @thismorning & @loosewomen 👚Fashion Designer & Ambassador @qvcuk Click link below to shop my clothing range:
Stacey Solomon @StaceySolomon
1.5M Followers 2K Following Mumma to 5 amazing humans! JungleQueen XFactor TV Presenter & Singer! OFFICIAL LooseWomen😁 enquiries: [email protected]
Lorraine @reallorraine
750K Followers 1K Following On TV early in the morning. LOVE border terriers. Views all my own. Patron of Help For Heroes. DUFC supporter. #WhatIfPodcast [email protected]
Stanford Medicine @StanfordMed
363K Followers 260 Following The official account of Stanford Medicine Advancing knowledge, improving lives
CureME - UK ME/CFS Bi.. @mecfsbiobank
4K Followers 214 Following Driving clinical and biomedical research for recognition, diagnosis and treatment of ME/CFS at @LSHTM. Home of the UK ME/CFS Biobank. Advocating for #pwME.
Coleen Nolan @NolanColeen
273K Followers 832 Following 🫖 & 🐶 enthusiast. Occasionally overshares on @loosewomen. Agony Aunt for @DailyMirror, @IrishMirror & @Daily_Record. Enquiries: [email protected]
Jane McDonald @TheJaneMcDonald
192K Followers 883 Following Official twitter page for singer, songwriter, entertainer and BAFTA award winning TV presenter Jane McDonald. *New album - 'Let The Light In' - out now!*
Linda Lusardi @lusardiofficial
43K Followers 595 Following A happy working mum after 3 decades still having great fun.For all work inquiries please contact [email protected] no
Sue Perkins 💙 @sueperkins
1.2M Followers 460 Following Mutton dressed as mutton. NETFLIX SERIES #perfectlylegal streaming worldwide now. PODCAST: https://t.co/wYRb9e5D0e
Sarah Millican @SarahMillican75
2.1M Followers 4K Following ON TOUR NOW. New Special via https://t.co/0BsgzGzZL8 Comedian, Standard Issue pod, Feminist. Tweets ending TEAMSM/TSM are by my team.Agent: Chambers
Times Radio @TimesRadio
72K Followers 163 Following Quality radio from @TheTimes 📻 Follow us for the latest news, in-depth analysis and intelligent discussion of stories that matter. WhatsApp us 👉0333 00 323 53
Covid-19 Patient Stor.. @RecoveryCovid19
3K Followers 814 Following A resource for those recovering from Covid-19. Find out more about what a recovery journey can look like and share your own recovery story to help others.
Dr. Fauci 🇺🇲(co.. @DrFaucis1
17K Followers 231 Following PARODY SCIENCE IS ORGANIZED KNOWLEDGE I like girls🧡 Believe science, facts, truth. TWEETS DO NOT REFLECT MY VIEWS#wearamask Trump/GOP are a disgrace.PARODY
BFMTV @BFMTV
4.2M Followers 565 Following Première chaîne d'info de France 📲 Retrouvez-nous sur TikTok/Instagram ➡ bfmtv
ITV News @itvnews
2.6M Followers 2K Following Breaking news and the biggest stories from the UK and around the world. Bulletins weekdays at 1:30pm, 6:30pm and 10pm on ITV. Email [email protected]
ME/CFS Quotes @mecfsquotes
1K Followers 104 Following Spotlighting ideas, news, and research related to the debilitating disease ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) #MECFS | by @winstoncb📢 Today ppl with #MECFS are protesting against the decision by @NICEComms to delay publication of the new ME/CFS guidelines. The delay follows pressure from an influential caucus of anti-science extremists who want to keep non-evidence-based treatments.🪧#r4today #BBCBreakfast
Today we’re protesting @NICEComms decision to pause the guidelines for M.E. Please don’t let a small group of corrupt people stop proper treatments for the millions of patients suffering from #ME and #LongCovid #PublishThatGuideline #ProtestNICE4ME
Delighted to be back at @DWP, as part of @BorisJohnson Cabinet
The Rt Hon Dr Thérèse Coffey MP @theresecoffey remains Secretary of State for Work and Pensions @DWP #Reshuffle
Today I wrote a letter tot the chief executive of NICE prof dr. Gillian Leng CBE and to the chairman of the board mrs Sharmila Nebhrajani MA, OBE corsius.wordpress.com/2021/08/18/let… @NICEComms
Yes, it doesn't matter if guidelines are accurate if they're not accepted by powerful medical associations. Better to have non-evidence-based guidelines as long as they're accepted by powerful medical associations.
Hey, clinicians! Let’s do evidence based practice…but only the evidence we like? 💁🏻♂️ nice.org.uk/news/article/n…
1/2 NICE pauses publication of updated guideline on diagnosis and management of ME/CFS The ME Association says: "We have just received this very unexpected news from NICE. We know nothing more at the moment other than what is in the press release."
We #pwme are a strong community of very vulnerable and caring people. There are many intelligent and informed people who are working for us. Meanwhile we must all try to remember to put our health first and rest where possible. It’s a horrible and unjust situation. Playing Mum!💙
What is NICE, exactly? That's easy to answer. It's corrupt, and a disgrace.
Absolutely incoherent. The #MECFS guidelines are "rigorous", produced "to the letter", but because (some) MDs unhappy, they're "paused". Impossible to adjust guidelines without diluting them. How is that good for patients? What is NICE for exactly? nice.org.uk/news/article/n…
We now know that Psychiatry is in charge of Medicine in the UK. @NICEComms #MECFS
Where are the doctors who want to see the new evidence-based guidelines published? Where are the doctors who want to stop harming patients and start helping them? For the love of god, won't you stand up for people with #MECFS now?
1/ Don’t miss this definitive FAQ for the forthcoming @NICEComms #MECFS guideline by Dr. Brian Hughes @b_m_hughes: 👉 thesciencebit.net/2021/08/15/the… 👈 Hughes has long provided incisive commentary on NICE & the flawed studies (e.g. PACE) that informed its old recommendations... 🧵
Waking up today seeing Kabul is about to fall and embassies evacuating. Puts into perspective Brexit Britain with shelf shortages and my new disability from long covid that has rendered me housebound. I’m safe and I’m free. #Afghanistan #HelpAfghanistanNow
I just received my first research grant! It's a seed grant from Stanford Mass Spec (SUMS) w/a funding match from @StanfordGenome. It probably doesn't mean as much to others as it does to me -- it's small potatoes compared to what #pwME need -- but I am hopeful and excited. (1/2)
For their unwavering unconditional love, companionship and their giant panda paws, I am thankful for these two every day and all the pussy cats who are our family. Thanks for sharing your world with us! X #internationalcatday
Keira - My little pal, my confidante, my calm in the face of any storm and my closest friend since 2007 x
In an era of long covid, making a doc about people faking chronic illness seems like a mad take. It’s also a big kick in the teeth to the millions of chronically ill people who have been disbelieved for years. How about making one about our mistreatment instead? @BBCNews
@StenHelmfrid @MTackCVS To summarise: #PACEtrial Psychiatrists + Nijmegen have been promoting harmful + ineffective treatments as safe + effective In other words, patients have been subjected to harmful #quackery for decades It's time for Medical Profession and @bmj_latest to condemn that #MedTwitter
"We know the extreme isolation endured due to this illness leaves some unable to communicate back to us. We hope that those who cannot be online or maybe only rarely can hear news from the community feel our determination and commitment to them." Moving message of support. 🙏
Our community is fighting every day to bring hope, health & justice to people with myalgic encephalomyelitis. In August we especially take time to honor the 25% living with the most severe form of this disease & remember those we have lost. #pwME #SevereME meaction.net/2021/08/04/a-p…
I see an @SMC_London article criticising patient involvement in the guideline process and supporting the high-profile pro-GET trio who walked away because their eminence was disregarded in favour of evidence. 🔮 #MECFS
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