Heath @MEawareness
#MyalgicEncephalomyelitis(M.E) sufferer. I had a virus & didnt recover. Are questions usually rhetorical? I cannot give blood, ever: https://t.co/tU1sspbOiU hfme.org/whatisme.htm UK Joined July 2011-
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My Severe and Very Severe #MECFS video has just gone over 100,000 views. Thanks to everyone who continues to share, and to the YouTube algorithm which has started pushing it a lot more over the last month 🙏📈 youtu.be/CTxwlf7LSrA?si…
Responding to anything Prof Garner says about the fraudulent PACE trial is a waste of time. The PACE team lowered outcome thresholds so participants could be "recovered" at baseline for physical recovery--and then hid those results. That's research misconduct.
Responding to anything Prof Garner says about the fraudulent PACE trial is a waste of time. The PACE team lowered outcome thresholds so participants could be "recovered" at baseline for physical recovery--and then hid those results. That's research misconduct.
It was more warm words but not a lot of action at the #MEDebate on 1 May for people living with #MEcfs. As @h_sharland writes for us, we've been here before in 2018 & it shows just how little things have changed for #pwME in the UK. Please do read/share: thechroniccollaboration.com/parliaments-la…
I’m really excited to see this finally starting to become real. This novel drug has been developed based on some excellent research & I have great hopes it will help treat ME/CFS one day. Not soon, but one day 🤞🏻
I’m really excited to see this finally starting to become real. This novel drug has been developed based on some excellent research & I have great hopes it will help treat ME/CFS one day. Not soon, but one day 🤞🏻 https://t.co/DZrlU4ukFB
The more I see 'fatigue' predominately used synonymously with M.E, I wonder whether it simply replaced & became code for Hysteria/ Neurosis? Like you say, in no other 'fatiguing' condition is the term so dominant & overused.
The more I see 'fatigue' predominately used synonymously with M.E, I wonder whether it simply replaced & became code for Hysteria/ Neurosis? Like you say, in no other 'fatiguing' condition is the term so dominant & overused.
When you conceptualize ME as "fatigue," as these investigators did, you miss the point entirely. You'll find abnormalities, of course, but you'll never find the explanation for "fatigue." ME is not "fatigue" anymore than Parkinson's, MS, cancers, ALS, are "fatigue."
When the authorities & media finally understand M.E can be fatal & cause premature death, surely we are way past the point that something should be done? M.E was coined in 1955 - nearly 70 yrs of useless distracting research, obfuscation & meddling to avoid the facts.
M.E. takes away so much from those we love. Was pleased to lead a Westminster Hall debate @UKParliament yesterday in support of this community and very much welcomed the fresh commitments from Government. @actionforme
Full article: Sajid Javid: patients with ME are being ‘dismissed’ by doctors The former health secretary said care was being held back for sufferers of the neurological disorder because of a lack of specialist NHS services archive.ph/2024.05.02-150…
Deeply honored to have been named one of @TIME's TIME100 Health honorees for my work with #MEAction in infection-associated chronic illnesses like #MECFS and #LongCOVID. Thanks, as ever, to the remarkable Jamie Ducharme, who wrote this wonderful piece. time.com/6967257/jaime-…
🔥Powerful closing statement from @GeorgeMonbiot on #MECFS "The fact that this is not one of our very top medical priorities is itself a massive scientific scandal"
Professor Brian Hughes on Medically Unexplained Symptoms: “It took GPs a median of just 12 seconds to decide that a patient’s symptoms were psychosomatic. In 50% of consultations, GPs had decided that symptoms were psychosomatic before the patients had even started talking.” →
APPOINTMENT AVAILABLE If you're a parent in #Ireland & awaiting an assessment for a child w suspected #MyalgicEncephalomyelitis, pls DM. A specialist from UK is visiting & seeing kids who are stuck waiting. Here we've only one consultant who's ME aware. The app is free of charge
"We win this time" - UPDATE on #SaveCarlasLife it's amazing what happens when you have a prominent barrister on speed dial... #ExposeMENow
So it finally happened, after 8 years of madness... @MrTopple and I are the proud parents of @TheChronicColab's brand new website!!! You know what to do...👇✊️ thechroniccollaboration.com
@elonmusk Please read this urgent plea for help. You have the opportunity to save the lives of millions of profoundly suffering people and lead the way to the biggest medical breakthrough of the century. My name is Whitney Dafoe and I have severe ME/CFS, short for Myalgic…
Full interview (4 mins 30) Dylan Kelly a patient with #LongCovid induced #ME and member of @hope4mefibroni on the Nolan show - BBC Radio Ulster. Mentions Post Exertional Malaise and the stigma he has faced. youtu.be/iveju00zfPo?si…
UPDATE: #SaveCarlasLife - it seems the hospital are finally doing something positive - but still not quite enough - plus #BringMillieHome FYI transcript of the video in reply below:
Epistemic injustice is harm done to a person which is related to their own knowledge, or personal experience. It is said to be a concept closely related to stigma – sadly, something commonly experienced by those with ME/CFS. Read more - tinyurl.com/yc8cexdm #pwME #MECFS
The most common disease you’ve probably never heard of: ME/CFS 🧬 A soul-crushing condition. Here is a thread for those who might not know that they have it or would like to know more 🧵
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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 🔬
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
Richard Vallée @richardvallee
3K Followers 5K Following I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
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.
John Peters @johnthejack
5K Followers 5K Following Unbeliever (political & relig), Wales rugby, #c4news, porridge, #MEcfs johnthejack.peters
Brian Hughes @bmhughe.. @b_m_hughes
6K Followers 3K Following Concerned citizen • Prof Psych • Find me at https://t.co/0wHhDdykVg
Hillary Johnson: jour.. @oslersweb
4K Followers 952 Following The Why "Delicious" "Devastating" "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose."
Phoebe Boag @PhoebsBo
3K Followers 4K Following Life was once Leith, homelessness & a forklift truck. Life is now being chronically ill with ME & writing about it. Autistic. Smorky’s human. She/her.
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
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.
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 Ben Marsh 💙 @bendymarsh
5K Followers 346 Following Neurodisability Paediatrician educating re Postviral synd inc #MECFS #pwME #LongCovid @PSPforMECFS @DoctorsWithME ExeterChiefs & LFC fan. Ravenclaw. Views mine
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.
#MEAction Network @MEActNet
21K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
ME Foggy Dog 💙 @MEFoggyDog
7K Followers 4K Following Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - https://t.co/TNEwofcNnm
Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne
#MEAction Network UK @MEActNetUK
7K Followers 610 Following UK branch of global grassroots movement @MEActNet. Empowering patients to fight for the #MillionsMissing with ME. Health equality & biomedical research now!
Jay Alexandra (Patcho.. @Patchouli_Jay
1K Followers 5K Following Usui & Karuna Reiki Master, Hibiscus Moon Advanced Crystal Master, Animal, Nature Lover, Mother of 2 Beautiful Souls, cats & a special doggo.#pwME🌈🙏✨
Krysta Grise @KryGrise
79 Followers 5K Following
Annie @Annie721210
8 Followers 492 Following
Christina @christina4hope
4K Followers 5K Following ME/CFS ,Fibromyalgia , lyme Boriliose,MCS ,Vax Injured( not corrona vax ).,Hearing loss ect….. also now on [email protected]
Myla Eveleigh @EveleighMy61138
94 Followers 5K Following
Rylee Suggett @suggett_ry75883
78 Followers 5K Following
Alice Maria @alice_maria28
426 Followers 615 Following #pwME and long time sufferer of #endometriosis 🌻 #adeno & #crohns Dog nerd 🐕 #adoptdontshop #myalgicencephalomyelitis
Bibi Carre @bibi_carre39975
31 Followers 5K Following
Red Carpet Medical @RedCarpetSolut1
253 Followers 1K Following Specializing in helping people improve + gain healthier lifestyles through the use of patented wearable wellness products AND improving their #IAQ, I am #EBV+
Hugo @mx__worldwide
589 Followers 1K Following They/them | 28 | ME/CFS since 2016, (very?) severe since 2022 after covid infection | Severe hyperacusis | Pro disability justice & pro Palestine 🇵🇸
long covid mum @longcovidisreal
190 Followers 224 Following Covid Mar 2020-hypermobile+POTS+slow blood flow in left IJV+poor gas exchange+myocarditis+MCAS+gastric anaphylaxis+menopause at 41=sarcasm with covid minimisers
Alice Fricker💘 @FrickerAlice
778 Followers 294 Following 19, Bedridden for 8yrs with #VerySevereME #hEDS #SFPN #MCAS #PoTS Chronic Insomnia & Chronic Bladder condition. Mother helps run account.
Dr. Ashley | The Pani.. @PanickedFoodie
9K Followers 4K Following Scientist | Cornell Alum | Food Blogger | #FluidMechanics #HeatTransfer #CovidIsAirborne On TikTok under The Panicked Diaries.
Andrew Green @AndrewG76201347
1K Followers 721 Following ME/CFS, POTS, MCAS. Female (ignore name). I post anonymously because I share medical details of my child too young to consent to public sharing.
Andrea Fighting for #.. @MECFSNanoneedle
941 Followers 3K Following Severe #MECFS Patient Bedridden. No energy to speak. #MECFSBiomarkers #FckTheNIH she/her I am #MECFS Diagnostic Biomarkers' biggest fan!
Brian Fog @useless_priest
6K Followers 5K Following Struggling to live, laugh, love in the midst of a global mass disabling event | #LongCOVID Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪
Laura Beckman @Ay_Laurita
378 Followers 897 Following Illustrator, designer. Climate organizer with Sunrise NYC. Chronically online chronic illness advocate. (for the people, against the illnesses 😅)
Timon van Haeften @HaeftenTimon
88 Followers 342 Following Endocrinologist; Retired Program Manager Medical School (Master studies) Utrecht; The Netherlands. Joined August 2020, check below
Maz 💙 @Mazza_Mac22
183 Followers 2K Following
Liz Meddings @lzmddngs
1K Followers 3K Following Heat, vent engineer. Energy efficiency. Passivhaus Designer, Retrofit Coordinator. Wear pink hat for Headway. Disabled after mild brain injury.
AloneLonghaulLady @LadyLonghaul
860 Followers 5K Following animal adorer • impatient advocate • LC 2020 • masker • needs more spoons • prefers clean air • some adult language • #ADHD #HSD #spoonie #pwME #FBLC #MCAS
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
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
Mona Isacson @MonIsacson
93 Followers 5K Following
Elly Smaller @EllySmalle83532
65 Followers 5K Following
Nova Ballena @BallenaNov35223
78 Followers 5K Following
Ferne Esty @fer_esty
39 Followers 5K Following
Erica Nishi @erica_nis
23 Followers 3K Following
Olivia-grace Scharbor @GraceSchar57870
86 Followers 5K Following
Melisa Diesel @melisa81761
80 Followers 5K Following
Malika Marci @MalikaMarc99444
49 Followers 5K Following
Digna Wagy @DignaWagy46016
66 Followers 5K Following
Sulema Sirnio @sirn_sulem
37 Followers 5K Following
Rya Shivers @rya_shiver
49 Followers 5K Following
Teddy Schallig @SchallTe
54 Followers 5K Following
Anaiya Lacombe @AnaiyaLaco7065
88 Followers 5K Following
Emmie Cancio @canci_emm
48 Followers 5K Following
Lorelei Rijos @rij_lorel
66 Followers 5K Following
Julienne Bowdich @julie_bowdi
81 Followers 5K Following
Shelby Ellis @ShelbyElli48016
82 Followers 5K Following
Irene Walking @walk_ire
43 Followers 5K Following
Ailsa Craycraft @ail_craycraf
23 Followers 5K Following
Bee 🐝🌼✨ @elbecp
1K Followers 4K Following Public Health student 🇦🇺 🇫🇮 Plant person. AuDHD. Chronically curious. Alphabet soup connoisseur. ♐⬆️ | ♃ in ♉ @elbecp.bsky.social
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.
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.
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
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
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
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 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
Richard Vallée @richardvallee
3K Followers 5K Following I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
Dr Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
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.
John Peters @johnthejack
5K Followers 5K Following Unbeliever (political & relig), Wales rugby, #c4news, porridge, #MEcfs johnthejack.peters
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. ✊
Brian Hughes @bmhughe.. @b_m_hughes
6K Followers 3K Following Concerned citizen • Prof Psych • Find me at https://t.co/0wHhDdykVg
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.
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
Mark Vink, MD @Huisarts_Vink
2K Followers 521 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
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
Hillary Johnson: jour.. @oslersweb
4K Followers 952 Following The Why "Delicious" "Devastating" "Indispensable" Reimagining Ruth "..has a raw power" Osler's Web "A relentless, meticulous, highly persuasive expose."
Billboards for LC/MEC.. @LCMEBillboards
1K Followers 215 Following Public awareness campaign. We need biomedical research and treatments for Long Covid/ME/CFS now. https://t.co/zppTxZjTK8
Alexis Mac Allister @alemacallister
124K Followers 31 Following Liverpool FC ❤️ Argentina 🩵🤍 @drinkhearth 🧉https://t.co/wUo9ga1nqb
Joan McParland MBE-My.. @JoanMcparland
427 Followers 435 Following 1999 Sudden-onset virally induced, WHO classified Myalgic Encephalomyelitis - a multi-system chronic disease NOT tired/fatigued. Breakthrough Leader NICON2018
Jack Black @jackblack
619K Followers 79 Following
#NotJustFatigue @njfatigue
596 Followers 663 Following We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue
Anfield Sector @AnfieldSector
91K Followers 1K Following Liverpool | Transfers | Small bits of information | - DM for enquiries and promos | Founder @TransferSector | Co-Founder @JDS_POD
Abigail Rudkin @rudkin_abigail
53K Followers 998 Following 23. BA (Hons) Fine Art. Artist. LFC fan. ArtByAbigailR on Etsy. Available for commissions. MA Student at UoM.
Hollie-Anne Brooks �.. @HollieAnneB
9K Followers 5K Following Award winning freelance journalist & broadcaster. Disability/politics/travel. Living a beautiful slow life with ME/fibro ✨ Tortured Poet 🤍 LPool N2 💜 SAFC ⚽️
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
遠藤 航 (Wataru En.. @wataru0209
318K Followers 442 Following @LFC @jfa_samuraiblue @pumafootball @PUMA_JPN @kimilaboratory @gekkan_we
Iain Stirling - new s.. @IainDoesJokes
273K Followers 920 Following Comedian and voice of Love Island. New tour RELEVANT on sale now!
Weird Things Caught O.. @ParanormaIVideo
555K Followers 86 Following The Most Surprising, Unusual, and Amazing Things Caught on Camera.
Mutual UFO Network @mufon
149K Followers 855 Following The Mutual UFO Network is a non-profit, 501 c3 established in 1969 to study the UFO Phenomenon. Curious? Join today! #ufotwitter #accidentaltruth
Eliza Charley | Actre.. @ElizaCharley
6K Followers 2K Following 🎥 ✨Australian Actress in Italy. Care about #mecfs #longcovid #climate #dv #auspol 🎭co-founder Mi Casa Theatre 📚Words in SoulTread & RoutledgePress She/her
Belinda Carlisle 💙 @belindacarlisle
39K Followers 18 Following The official Twitter of Belinda Carlisle, Global chart-topping artist and lead singer of the most successful all female rock band, The Go-Go's.
Bad Lip Reading @BadLipReading
325K Followers 111 Following I put words into other people's mouths. The OFFICIAL Bad Lip Reading Twitter account
sarah swastrosarah.bs.. @swastrosarah
2K Followers 876 Following speaking up for everyone affected by severe/very severe #ME. My daughter, my only child, died from ME Oct 2021. Inquest opened. Full hearings expected July 2024
Almost Died💀 @PerfectlyCutSho
194K Followers 24 Following it is not mandatory to follow me.. but if you don't, it is possible that someday you'll appear in the video😱
Rochdale Borough Coun.. @RochdaleCouncil
24K Followers 1K Following News, events and emergency information. Monitored weekdays, 9am-5pm.
The Last of Us @TheLastofUsHBO
463K Followers 24 Following When you’re lost in the darkness, look for the light. The @HBO original series #TheLastOfUs is streaming now on @StreamOnMax.
Jude Bellingham @BellinghamJude
2.1M Followers 259 Following Footballer For Real Madrid🤍 Adidas Athlete⚽️Instagram: judebellingham - #JB22 [email protected]
Sofia Vergara @SofiaVergara
8.4M Followers 108 Following Colombian, Mother, Actor, Entrepreneur, cake lover 🍰 and judge on America’s Got Talent
Police Squad! @policeincolor
21K Followers 1 Following Police Squad! In Color - A tribute to the tragically short-lived TV drama. Not officially sanctioned in any way whatsoever.
Paranormal Activity P.. @PActivityPod
2K Followers 15 Following 👻 Paranormal Podcast with Yvette Fielding 🎧 Mondays, Thursdays and Saturdays 🎙️ Send your encounters to [email protected] or WhatsApp 07599927537
Silent Hill Official @SilentHill
106K Followers 27 Following The fear of the blood tends to create fear for the flesh. Konami Digital Entertainment https://t.co/MgEMbJnRmf
Anthony Hopkins @AnthonyHopkins
984K Followers 59 Following Artist, Painter, Composer, Actor of film, stage and television
Lorelei 🌕🧙🏻�.. @hatpinwoman
59K Followers 8K Following “Suffragette-y AF”, a “radfem scold” or a “batshit wazzock” depending on who you ask. Proud member of the Terven
DECO @decobanduk
35K Followers 1K Following London Pop Band. Tunes & Tour tickets in the link below👇 💛 All enquiries: [email protected]
Jennie Jacques @JennieJacques1
19K Followers 416 Following avid reader 📚 lover of science 🧪 🧬 actress 🎭 & writer ✍️ #disabilityswareness 🌻 #mecfs 💙 @bake4mecfs
Enough is Enough @eiecampaign
230K Followers 416 Following The campaign to fight the cost-of-living crisis.
Guy Fawkes @blunted_james
54K Followers 13K Following Politics. For the millions, not the millionaires. The words of the prophets are written on the subway walls..
Darwin Núñez @Darwinn99
785K Followers 140 Following @LFC y @Uruguay. De Artigas, Uruguay. 𝗥𝗘𝗦𝗜𝗟𝗜𝗘𝗡𝗖𝗜𝗔
Sam Ryder @SamRyderMusic
108K Followers 536 Following The #1 album ‘There’s Nothing But Space, Man’ Out Now! ⚡️
ME/CFS Priority Setti.. @PSPforMECFS
1K Followers 82 Following Led by patients, carers & clinicians, the ME/CFS Priority Setting Partnership will identify the top 10 research priorities to influence future research funding.
Led By Donkeys @ByDonkeys
933K Followers 1 Following Art, activism and accountability 🐴. All our work is funded by the public, no big donors. Become a supporter👇. DMs open 📩.
Long COVID Physio @LongCOVIDPhysio
27K Followers 1K Following #LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Volodymyr Zelenskyy /.. @ZelenskyyUa
7.4M Followers 1 Following President of Ukraine / Президент України
lucy dawson🦿🦓 @ludawinthesky
72K Followers 909 Following that one girl who be tittying with the cane and crocs matching ✉️ [email protected] 📸ig @ luuudaw (she/her)
Maayan Ziv @maayanziv
10K Followers 2K Following Founder of @AccessNowApp. Disability Activist. Canada’s Top 40 under 40.My Severe and Very Severe #MECFS video has just gone over 100,000 views. Thanks to everyone who continues to share, and to the YouTube algorithm which has started pushing it a lot more over the last month 🙏📈 youtu.be/CTxwlf7LSrA?si…
Responding to anything Prof Garner says about the fraudulent PACE trial is a waste of time. The PACE team lowered outcome thresholds so participants could be "recovered" at baseline for physical recovery--and then hid those results. That's research misconduct.
Do @actionforme want to comment on this? It is an interpretation of events but an incorrect one. @MEAssociation @MEActNetUK @MEActNet @meactionscot @SonyaChowdhury #pwME @wilshica @davidtuller1 @Huisarts_Vink
It was more warm words but not a lot of action at the #MEDebate on 1 May for people living with #MEcfs. As @h_sharland writes for us, we've been here before in 2018 & it shows just how little things have changed for #pwME in the UK. Please do read/share: thechroniccollaboration.com/parliaments-la…
I’m really excited to see this finally starting to become real. This novel drug has been developed based on some excellent research & I have great hopes it will help treat ME/CFS one day. Not soon, but one day 🤞🏻
#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
When you conceptualize ME as "fatigue," as these investigators did, you miss the point entirely. You'll find abnormalities, of course, but you'll never find the explanation for "fatigue." ME is not "fatigue" anymore than Parkinson's, MS, cancers, ALS, are "fatigue."
M.E. takes away so much from those we love. Was pleased to lead a Westminster Hall debate @UKParliament yesterday in support of this community and very much welcomed the fresh commitments from Government. @actionforme
Full article: Sajid Javid: patients with ME are being ‘dismissed’ by doctors The former health secretary said care was being held back for sufferers of the neurological disorder because of a lack of specialist NHS services archive.ph/2024.05.02-150…
Today was the best day ever 🥹 After years of painting Jurgen, I finally got to show him my work❤️ He said “we need to get a video! Let’s do a video”. I was in utter shock. The nicest person I’ve ever met. Hopefully he hasn’t seen the last of me yet🫶
Deeply honored to have been named one of @TIME's TIME100 Health honorees for my work with #MEAction in infection-associated chronic illnesses like #MECFS and #LongCOVID. Thanks, as ever, to the remarkable Jamie Ducharme, who wrote this wonderful piece. time.com/6967257/jaime-…
🔥Powerful closing statement from @GeorgeMonbiot on #MECFS "The fact that this is not one of our very top medical priorities is itself a massive scientific scandal"
Professor Brian Hughes on Medically Unexplained Symptoms: “It took GPs a median of just 12 seconds to decide that a patient’s symptoms were psychosomatic. In 50% of consultations, GPs had decided that symptoms were psychosomatic before the patients had even started talking.” →
APPOINTMENT AVAILABLE If you're a parent in #Ireland & awaiting an assessment for a child w suspected #MyalgicEncephalomyelitis, pls DM. A specialist from UK is visiting & seeing kids who are stuck waiting. Here we've only one consultant who's ME aware. The app is free of charge
"We win this time" - UPDATE on #SaveCarlasLife it's amazing what happens when you have a prominent barrister on speed dial... #ExposeMENow
So it finally happened, after 8 years of madness... @MrTopple and I are the proud parents of @TheChronicColab's brand new website!!! You know what to do...👇✊️ thechroniccollaboration.com
@elonmusk Please read this urgent plea for help. You have the opportunity to save the lives of millions of profoundly suffering people and lead the way to the biggest medical breakthrough of the century. My name is Whitney Dafoe and I have severe ME/CFS, short for Myalgic…
Full interview (4 mins 30) Dylan Kelly a patient with #LongCovid induced #ME and member of @hope4mefibroni on the Nolan show - BBC Radio Ulster. Mentions Post Exertional Malaise and the stigma he has faced. youtu.be/iveju00zfPo?si…
🚨 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
UPDATE: #SaveCarlasLife - it seems the hospital are finally doing something positive - but still not quite enough - plus #BringMillieHome FYI transcript of the video in reply below:
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