Action for M.E. @actionforme
We take action to end the ignorance, injustice & neglect faced by the 250,000 #pwME in the UK. Online: Mon-Fri 10-4. Helpline: 0117 927 9551 Mon-Fri 10.30-3pm actionforme.org.uk Bristol Joined April 2009-
Tweets17K
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Followers13K
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Following2K
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Likes7K
Only one day left to nominate us for the Health & Wellbeing Special Draw! There's still time to nominate us and share! Thank you 🙌 #pwME #Health #Wellbeing #Fundraising
Only one day left to nominate us for the Health & Wellbeing Special Draw! There's still time to nominate us and share! Thank you 🙌 #pwME #Health #Wellbeing #Fundraising
Help us supprt #pwME of all ages by nominating us to win £5k in Movement for Good's Health & Wellbeing Special Draw! Click the link below, enter our charity number (1036419) & select 'Health' from the dropdown menu. It only takes a minute! Thank you 🙏 health.movementforgood.com/?utm_source=ma…
We know that #LivingWithME can be hard, especially when you're young. Our counsellors understand #MECFS & its impact. They're here to listen to you & ensure you get the support you need. For more info about our FREE Young People's Counselling Service: ow.ly/NnpH50Rl7oT
We’re setup in St. James’ Park for the @LondonMarathon ready to cheer on our wonderful Action for M.E. team! 👏🙌 #LondonMarathon #Fundraising #MECFS #MyalgicE #pwME
We to say a huge thank you & good luck to our amazing #LondonMarathon team! We simply wouldn't be able to continue our work supporting #pwME without their support. We'll be at the race on Sunday cheering the team on so look out for updates then! #Fundraising #MECFS #MyalgicE
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...
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.
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Tom Kindlon @TomKindlon
14K Followers 577 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 823 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
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.
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✨
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.
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
Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
#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
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
Jo @cfs_jo
3K Followers 1K Following CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Also on Insta as JustJoHere and BlueSky as JustJo
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Dr Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
iain waghorn @WaghornIain
13 Followers 63 Following
NZ @NZ_fund_MECFS
236 Followers 531 Following Anerkennung. Versorgung. Forschung. Jetzt! #OpferDerStaatsgewalt #LongCovid #MECFS #PostVac #pwME #pwLC #NotRecovered #MillionsMissing #BC007
David MacAart @davemacaart
3K Followers 5K Following #freejulianassangeNOW #Freepalestine #scottishindependenceASAP
It's ME Helen @positively___ME
834 Followers 571 Following Living alone with moderate ME, not coping, getting worse. Struggle with such poor brain function. Try to make stuff on my good days, hoping to sell some, maybe
Claire Jones @Claire145
849 Followers 620 Following BCUHB Consultant Physiotherapist. Long Covid Physio Disability & Safe Rehab Committee Member. DProf Student at Uni of Chester. Views are my own.
Joy @JMrsRNMomMM
4 Followers 72 Following
Yann @yann_mecfs
89 Followers 52 Following Very severe ME/CFS (Long Covid) since 1 year. Not always able to use phone. Have not been able to sit since August. #LongCovidMoonshot
TrishBoxall @TrishBoxall
87 Followers 131 Following
Phil Prydderch 🏴�.. @PJPrydderch
1K Followers 2K Following Dad of two | EVs | Born at 332 ppm CO2 | ME, FMS, POTS | @wrexham_AFC ex part-owner⚽️ | M.CIWEM | Flood Defence & Hydrometry
Luba Macpherson @LubaMacpherson
852 Followers 2K Following I think that everyone is unicue and special.
Dura Lessons @terrafigura
57 Followers 305 Following Posting on anything that catches my attention: Preventive Health | Public health | Social Justice | Species Survival | Born @ 3.05bn
Prof Gemma Carey, PhD.. @gemcarey
25K Followers 2K Following Public admin, social policy, public health. Lots of NDIS @UNSW. PROVAX, vax injured - in severe ME recovery. (And non aca-author). Views are my own
Emma Chilvers @chilvers_emma
250 Followers 1K Following Mum of Long Covid warrior- opinions are my own.
Nora Lennox @NoraLMartin
5 Followers 104 Following
Rete Long Covid Press @ReteLongCovid
116 Followers 973 Following Benvenuti nella Rete Long Covid Italia 💙 https://t.co/T6NThQfoQL
eggy @cappucinocloud
53 Followers 388 Following #ActuallyAutistic #pwME hooman bean. cat & dog parent. amateur bird watcher. invisible.
Penny Russell @PennyRu99944901
0 Followers 61 Following
Bob Hope @2Tired2Tango67
7 Followers 135 Following
Emily 🥀 @rogue_runaway
72 Followers 250 Following waiting for a biomarker, treatments and a cure for myalgic encephalomyelitis
Hannah Hopson (née W.. @WrightHL94
42 Followers 191 Following Researcher & UCL PhD Student. Interested in maternal mental health, early years, and couple relationships. She/her
Tought @Tought156835
26 Followers 247 Following In the dull and boring world, there is also occasional luck. No cross, no crown.
Jennifer Ramos @JenniferRa41157
14 Followers 814 Following
Monimeeeee @sayitboldlynow
156 Followers 542 Following #Godfirst #antipetrista #animalista. De Cali Ve ! #uribista #Trump. Fuera Petro!
G @notisaidtheworm
1K Followers 2K Following Trying to make change for a better world. #FindTheMissing~Victim Advocacy~Investigative Research~ #EndAbuse #SocialJustice #LoveIsLove #BLM #MaskUp she/her🌻
Rhyothemis princeps @RhyothemisP
161 Followers 498 Following ~ fluttering from topic to topic ~ Retired science librarian; MLIS, MSc biology Please see my website for important information on the future of #SciComm
Astrotastic @Astrocat101
68 Followers 149 Following Skimming through my twitter, a casual observer might conclude I like tea, snakes and Mad Max. That's not entirely true. I also like cake. *Enby Ace, s/he/they*
Steve Fifield 💙 �.. @SteveFifield3
101 Followers 433 Following Informed decisions from verifiable truth & facts please. Avoid unsubstantiated opinions / beliefs. #Equality #justbe #inclusion #LGBT+ ally.
sueemmahEDS @sueemmahEDS
846 Followers 2K Following #latediagnosedAutistic #hEDS #POTS #MCAS, she/her
Michelle Dando 🫥 @MDando1
75 Followers 256 Following Worked in NHS. Was going to be a nurse. Now stuck in my bedroom due to #myalgicencephalomyelitis #millionsmissing #ME Best laid plans… Is this my life now?
Anji @Anji2019
114 Followers 218 Following
Patricia Paulson @Patrici08602408
0 Followers 4K Following
Monica @InsularEntropy
681 Followers 3K Following Electrical Engineering Student (Undergrad, Senior) with a special interest in #Neuroscience. I discuss #Akathisia.
energy @ohlookadoggie
108 Followers 2K Following
Shingo @shingo__ss
0 Followers 513 Following
Healthwatch North Yor.. @HealthwatchNY
2K Followers 1K Following We make sure NHS leaders and other decision makers hear your voice and use your feedback to improve care.
Rachel @Rachelina16
776 Followers 2K Following #MKD Patient | Founder & Chair of RACC-UK | Patient Advocate | Member of @RheumatologyUK @britsocimm | Views are my own
Jenny_Edwards CBE @Jenny_Edwards
12K Followers 13K Following Chair People's Health Trust. FFPH, Soc of Leadership Fellows. Retweet does not = agreement. Also [email protected]
Sarah Barker @SarahBarx035
27 Followers 132 Following
Mary Broadbent @Mary2bOptim
28 Followers 61 Following Person with M.E. and advocate. Ex Positive Dog Trainer before becoming more seriously ill in June 2022.
Sarah Ritchie @sarahjritchie80
402 Followers 345 Following Fundraiser. Paint swisher. Beach walker. List writer. Jam before cream.
Maria Sale8.bsky soci.. @MariaSale8
1K Followers 2K Following I never know what to say on these things! She/her (it's a start, till I think of something else to say).
Claire Hirst @claire_hir24347
18 Followers 108 Following Raising awareness and charting my journey with ME/CFS
Caroline Li @MsLi22
2 Followers 51 Following
LilithNick @J31ld8MDYnVu3iK
3 Followers 365 Following
ray @_rayhc_is_sick
39 Followers 60 Following @_rayhc uses this account to keep up with the latest MECFS research, sick since July 5 2023 after likely mycoplasma p.
Laura M @LauraMoonFelix
231 Followers 1K Following PhD student researching academic identity (academics -57, society -3), love my awesome daughter 💖
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...
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.
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.
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
Tom Kindlon @TomKindlon
14K Followers 577 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
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.
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.
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✨
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. ✊
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.
Martin Hippe @pausedME
7K Followers 471 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
#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
Jo @cfs_jo
3K Followers 1K Following CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Also on Insta as JustJoHere and BlueSky as JustJo
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Dr Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
Joshua Stokes @JoshuaStokesITV
3K Followers 2K Following Isle of Man Reporter @GranadaReports | RTS Emerging Talent 2024 | Self-shooter | @ITVNews | @ITVX | @SolentUni Alumni | Email: [email protected]
West Ham United Found.. @WHUFoundation
10K Followers 878 Following 👋 We’re @WestHam United Foundation, delivering life changing opportunities to almost 50,000 people across east London, Essex and beyond. #COYI ⚒
Binita Kane @BinitaKane
31K Followers 4K Following #LongCovid interested Lung Doctor | [email protected] | YouTube channel @LCCWYCD | Co-founder #southasianheritagemonth @SAHM_UK |
Royal College of Phys.. @rcpsglasgow
15K Followers 2K Following Royal College of Physicians and Surgeons of Glasgow. World leader in training, assessment and support for healthcare professionals. Retweets not endorsements.
Long Covid Support �.. @long_covid
32K Followers 2K Following UK Charity • Support • Advocacy • Research Involvement • Awareness • Education • Keeping people with #LongCovid at the centre. #CureLongCovid
Scot Gov Health @scotgovhealth
70K Followers 1K Following Official channel for Scottish Government news on NHS Recovery, Health and Social Care.
Prof Sir Gregor Smith @DrGregorSmith
30K Followers 2K Following Chief Medical Officer for Scotland, Honorary Professor, University of Glasgow; Honorary Air Commodore 612 Squadron, Royal Air Force. #RealisticMedicine
Scottish Community Li.. @ScotCLWnetwork
508 Followers 217 Following Scotland's national network for primary care link working - sharing, learning & networking to improve outcomes for patients & communities. Hosted by @VHSComms
Steve Gardner @showcasebio
518 Followers 321 Following Driving precision medicine - understanding disease biology and patient outcomes using unprecedented high resolution patient stratification. CEO @precisionlifeai
Trustees' Week @TrusteesWeek
11K Followers 2K Following #TrusteesWeek (6-10 Nov 2023) is an annual event to showcase the great work you do and provide opportunities for everyone to get involved and make a difference.
Hannah Preston @hannahpreston91
644 Followers 413 Following Clinical Research Fellow- BHF, REA3 Renal Registrar - Edinburgh RCPE T&MC Co-chair Yoga lover, coffee drinker, average runner!
bethereificould @bethereificould
606 Followers 1K Following A mirrorbox and map taking messages from people with ME/CFS or long COVID to places they love but can no longer get to #ACEsupported #socialart #missingmillions
IoD @The_IoD
60K Followers 1K Following The UK's largest membership organisation for business leaders.
Soap Soup @soapsouptheatre
527 Followers 526 Following Innovative Visual Theatre for children and their families
James Knight 💙💛 @Jameskn123
237 Followers 876 Following Twitch affiliate / motorsport and football fanatic / Chronic Fatigue Ehlers-Danlos suffer
WHO/Europe @WHO_Europe
213K Followers 1K Following The WHO Regional Office for Europe is one of 6 WHO regional offices around the world. It collaborates with a range of public health stakeholders in the Region.
Enable Magazine @EnableMagazine
23K Followers 5K Following Enable Magazine is the UK's leading disability and lifestyle title, filled with news, exclusive interviews and real-life stories from the disability community
Pogo Digital Health @pogo_health
165 Followers 408 Following We use technology to solve healthcare's biggest challenges - improving communication, saving time and money.
RemissionBiome MECFS/.. @remissionbiome
10K Followers 434 Following Community science, patient-led project of the non-profit, decentralized research org, @renegaderes. Serendipity meets preparation. https://t.co/IkTfALVBWC
PolyBio @polybioRF
10K Followers 2K Following 501(c)3 transforming how #LongCovid, #ME/CFS & LongLyme are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
Putrino Lab @PutrinoLab
34K Followers 382 Following We make people (and technology) better at Mount Sinai. Opinions are my own.
Millions Missing Can @MillionMissCan
2K Followers 3K Following Making sure #millions are seen, #millions heard and #millions funded for the cause of treating persons with Myalgic Encephalomyelitis!
Millions Missing Fran.. @MillionsMissgFr
2K Followers 1K Following Asso de patient·e·s Pour la prise en charge de l'#EncéphalomyéliteMyalgique en France & le développement de la recherche #EBM #handicap #AutodéfenseSanitaire
European ME Coalition.. @EMEC_advocacy
1K Followers 61 Following Advocacy organization for ME/CFS patients and their carers in Europe
AMMES @AmmesAdmin
2K Followers 44 Following The American ME and CFS Society is a national non-profit serving the needs of patients and caregivers through support, advocacy, and education. #MECFS
Charitable Travel @CharitableTrav
586 Followers 564 Following Award-winning travel agency 🏆. Book your holiday with us & donate 5% of the cost to a charity of your choice at no extra cost! ☀️🌴✈💸❤️
Bake4ME/CFS @bake4mecfs
231 Followers 1 Following 💰 Donate £4 🧁 Bake 4 ME/CFS 👩🏼🤝👨🏽 Nominate 4 friends - Donation link below ⬇️
Daniel Padfield @padpadpadpad
2K Followers 2K Following Microbial ecologist/carer. NERC Fellow at the University of Exeter. Mainly given up Twitter, trying mastodon at: ecoevosocial / @padpadpadpad
Jessica Rawnsley @JrRawnsley
1K Followers 1K Following journalist. news @thetimes. prev @pa @ft. contributor @theeconomist @newstatesman @independent @guardian @prospect_uk @theipaper @telegraph @businessgreen +
Voluntary Health Scot.. @VHSComms
5K Followers 2K Following The national network for Scotland's voluntary health organisations. Working for a healthier, fairer Scotland served by a thriving voluntary health sector.
PrecisionLife @precisionlifeAI
2K Followers 2K Following PrecisionLife® is a pioneering precision medicine company finding better, more personalized treatment options for complex chronic diseases.
Sara Meddings @SaraMeddings
1K Followers 2K Following Consultant @ImROC_comms and Trustee @peer_partners . Recently retired Consultant Clinical Psychologist @withoutstigma All tweets in a personal capacity
The Ehlers-Danlos Soc.. @TheEDSociety
24K Followers 6K Following The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Matt Chorley @MattChorley
118K Followers 3K Following On Times Radio weekdays 10am-1pm, in The Times on Saturdays, on How To Win An Election podcast every Tuesday, on tour all over
The Times and The Sun.. @thetimes
1.8M Followers 860 Following The best of our journalism. Subscribe: https://t.co/x8014SXrqQ
Richard Moss @BBCRichardMoss
9K Followers 2K Following Politics North presenter and Political Editor for @BBCNEandCumbria, @bbcnewcastle, @bbccumbria, @bbctees
Emma Barnett @Emmabarnett
190K Followers 12K Following BBC Broadcaster: @BBCWomanshour Newsletter: ‘Trying.’ Column: @theipaper. Author: It’s About Bloody Time. Period 🩸 Patron: @smartworkshq
Sajid Javid @sajidjavid
304K Followers 1K Following Rt Hon Sir Sajid Javid MP | Member of Parliament for Bromsgrove | Former Chancellor of the Exchequer
Ali 🦄 @AliW33
1K Followers 2K Following Mummy to a Princess. Love a random act of kindness. Long term sufferer of M.E. Leeds.
Finn, PhD @Finn000000000
655 Followers 241 Following PhD ❤️ Regeneration, immunology 👨🏻🔬 Ex 🚴♂️ 🧗🏻♂️ 🏃🏻♂️ Vax-injured/ME 🧪 🧫 🧬 pronouns: not/retarded
Emily Burt @EmilyPBurt
3K Followers 1K Following Editor @ThirdSector / formerly @PeopleMgt / Co-Founder @FumbleUK / Other words @Campaignmag, @Work_Magazine, @StuffTV / she/her 🏳️🌈
Paul Scully MP @paulscullymp
3K Followers 2K Following Labor MP for Wollongong, Minister for Planning and Public Spaces. Authorised by Paul Scully, G2 51 Crown St Wollongong NSW 2500
Jim Shannon MP @JimShannonMP
6K Followers 628 Following Democratic Unionist Party DUP Health Spokesperson in Westminster Member of Parliament for Strangford [email protected] 02891827990
Marion Fellows MP @marionfellows
13K Followers 1K Following Motherwell & Wishaw MP. SNP Westminster spokesperson on Disabilities. Chair of the Post Offices APPG. Promoted by Marion Fellows, 7 Scott St, Motherwell ML11PN
Philip Hunt @LordPhilofBrum
14K Followers 782 Following Philip Hunt is a Labour Peer in the House of Lords
Thank you @actionforme for getting this off the ground. Will email your letter to my MP @ConorBurnsUK Westminster Hall debate on ME/CFS research | Action for ME #BringMillieHome #SaveCarlasLife actionforme.org.uk/news/westminst…
Thank you @sajidjavid for all your work keeping focus on #MyalgicEncephalomyelitis @actionforme
🚨 Westminster Hall debate on #MECFS 🚨 Our new Parliamentary Champion, @sajidjavid, will be leading a #WestminsterHall debate on Weds 1 May, 16.30 - 17.30 ahead of #WorldMEDay Read the full article on our website to find out more ow.ly/GBl550RoKJ8 #pwME #MyalgicEAction
@actionforme It's super easy to do - even with certain level of cognitive dysfunction... 5 mins approx. Thanks for supporting this on behalf of people with #MECFS and #LongCovid
@actionforme @MEAssociation @MEFoggyDog Brilliant thank you so much for being willing to share it 💪
The #GlobalVoiceForME twibbon is now available! Be out and proud as one of millions fighting for the rights of people with ME worldwide in the run up to #WorldMEDay on May 12th! #Twibbon #MECFS #EMSFC #pwME buff.ly/3UiFQUw
Prominent advocacy groups, including @MEAssociation @actionforme are pushing for changes in Millie’s care as well as major changes in how the @NHSuk @NHSEngland handles severe #ME cases.
These cases of young women with severe ME are pretty devastating. Here's a bit about Millie's situation. virology.ws/2024/04/09/tri…
On the 26th of May, I will be taking part of the Edinburgh Marathon Festival on behalf of @actionforme It’s a charity close to my heart so any donation is welcomed motivation! trk.justgiving.com/f/a/SibCyO26Kt…
. @itvnews Family stage protest outside #Lancaster hospital over medical treatment of 18-year-old girl "Millie McAinsh has been at the Royal Lancaster Infirmary since January 2024 after she became unable to eat, speak, or swallow due to what her family believes is ME - or…
Dr William Weir and Dr Charles Shepherd are both involved in helping Millie and her family. The ME Association shares the Secretariat for the APPG on ME with Action for ME and we support the work of the APPG and its upcoming focus on severe ME. The group will be reviewing the…
We have issued a statement in response to the concerning reports surrounding Millie's care. Full statement available on our website: actionforme.org.uk/news/bringmill… #BringMillieHome #pwME #MyalgicE #SevereME
In case you missed the live version, watch DecodeME on last night’s Channel 4 news. shorturl.at/DOQ59 #DecodeME #MECFS #pwME
Joanna Bruce @therealmecfs @Channel4News “there was a subtle undertone that I was a malingerer, looking looking for an easy way out. But nobody would choose this life” So true.
Joanna Bruce @therealmecfs, #MEAction Scotland volunteer, was interviewed on @Channel4News tonight & talked movingly of the need for more ME research & her involvement in the groundbreaking @DecodeMEstudy. Thank you Jo. ow.ly/UFEh50R8LgQ
Absolutely brilliant Jo - and everyone at @DecodeMEstudy
Joanna Bruce @therealmecfs, #MEAction Scotland volunteer, was interviewed on @Channel4News tonight & talked movingly of the need for more ME research & her involvement in the groundbreaking @DecodeMEstudy. Thank you Jo. ow.ly/UFEh50R8LgQ
A million thanks to Jo Bruce @therealmecfs for being so courageous & amazing in this interview on #ME #MEcfs on @Channel4News So grateful to you Jo 💙🫂 "World's largest genetic study of ME @DecodeMEstudy offers hope to sufferers" #pwME #MEdTwitter youtu.be/3bPNjc4dRRs?si…
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…
It’s a good night for #MyalgicEncephalomyelitis coverage with @itvnews and @Channel4News helping raise much-needed understanding of the impact of ME, #LongCovid @actionforme @DecodeMEstudy
1/6 In tonight’s segment on @GranadaReports our CEO, @SonyaChowdhury, speaks to @JoshuaStokesITV about the lack of specialist services for ME, particularly in the North West Read the article & watch the interviews here: ow.ly/oyYw50R8FUY
Linda Tannenbaum is first up to speak at the conference today here in Lisbon. She starts by thanking the brilliant Joan Serra Hoffman for her vision in organising this event and thanking those with lived experience who are fundamental to all this work. #MELCFladLisbon
Sonya shared her experience as a third sector CEO of @actionforme, while Sian discussed the benefits of working across borders to share resources and knowledge. Both focussed on the importance & potential to accelerate understanding, research and education around #MyalgicE.
Our Co-Chair @SonyaChowdhury, and Head of Advocacy and Comms, @SianGotME, today joined a panel discussion on patient advocacy in #MECFS and #LongCovid, highlighting the inequities and stigma faced by people with these illnesses and the power of collaborative work to build change.
Susan Levine now giving a brief history of ME and related epidemics. Starts by stating the hard truth that very little has changed in the many years she has been working on this. #MELCFladLisbon
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