KarenG @tenacious_mumma
Mum/carer constantly fighting 4 health care 4 my beautiful daughter @spooniesophia bedbound with #lymedisease #severeME #POTS #chronicpain #allodynia #vertigo gofundme.com/f/sophiafights… Joined October 2015-
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GP said today his preferred reference source is CKS (Clinical Knowledge Summaries). CKS covers 370 topics with a 'focus on the most common & significant presentations in primary care'. There's no CKS for ME - not important or prevalent enough to be listed in an index used by GPs?
We are excited to show you the first video of our campaign. This video will air on Austrian television over the next few weeks. Please help us raise awareness by sharing this tweet. More info: weandmecfs.org/awareness Donations help us liberate those affected. 🙏 #MECFS 💙
I made a Daisy chain and took it up to Sophia’s room. She loved it and kept smelling it because it smelled of the garden. The garden she hasn’t seen through the window for over a year and hasn’t been in for over 5 years #millionsmissing2024
'There are very large numbers of people suffering to an absolutely outrageous extent,most of them women,often with long term conditions with horrendous impacts on wellbeing.The fact that this is not one of our very top medical priorities is in itself a massive scientific scandal'
'There are very large numbers of people suffering to an absolutely outrageous extent,most of them women,often with long term conditions with horrendous impacts on wellbeing.The fact that this is not one of our very top medical priorities is in itself a massive scientific scandal'
Living with very severe ME is an ongoing daily grieving process. Grieving all the things you have lost, the things you are slowly losing and the things you know you are about to lose.
On Whitney’s proposed ME severity scale Sophia probably sits in ‘Extremely Severe C’. The loss of pre-ME/CFS function for this category is estimated to be close to 100% & i would not disagree with that. Current scales fall far short of portraying this extreme level of incapacity
On Whitney’s proposed ME severity scale Sophia probably sits in ‘Extremely Severe C’. The loss of pre-ME/CFS function for this category is estimated to be close to 100% & i would not disagree with that. Current scales fall far short of portraying this extreme level of incapacity
Brain retraining and positive psychology won’t cure an impairment of mitochondrial energy production. Pass it on.
All this requires further investigation. The injustices done to patients with ME/CFS are compound and multiple. It's not just individual clinicians in the frame, but universities and departments, insurance companies, government and media. Great wrongs have been done.
All this requires further investigation. The injustices done to patients with ME/CFS are compound and multiple. It's not just individual clinicians in the frame, but universities and departments, insurance companies, government and media. Great wrongs have been done.
I’m crying. As a journalist with ME, this article is everything I could ever wish for. Finally, on a huge platform, someone has voiced our truth and called out the painful and damaging rhetoric that blights our lives. Thank you, @GeorgeMonbiot from every single one of us #pwME
I’m crying. As a journalist with ME, this article is everything I could ever wish for. Finally, on a huge platform, someone has voiced our truth and called out the painful and damaging rhetoric that blights our lives. Thank you, @GeorgeMonbiot from every single one of us #pwME
The irreparable harm that’s been done (& continues today) by the insistent psychologising of this devastating, life changing physiological illness is truly shocking. Those of us who live it, know it. Thanks @GeorgeMonbiot for making the wider world conscious of this scandal
The irreparable harm that’s been done (& continues today) by the insistent psychologising of this devastating, life changing physiological illness is truly shocking. Those of us who live it, know it. Thanks @GeorgeMonbiot for making the wider world conscious of this scandal
‘Post-acute infection syndromes have historically been a “significant blind spot” for medical research.’ Good to see this recognised and the obvious links to ME mentioned.
‘Post-acute infection syndromes have historically been a “significant blind spot” for medical research.’ Good to see this recognised and the obvious links to ME mentioned.
Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm - Sign the Petition! chng.it/b2qc72fv via @UKChange
One of many experiences I have of ‘this massive culture problem within the medical profession’ was being told by a Bristol NHS Neurologist that he felt the ME label was ‘controversial’ & often seen in a pejorative light amongst medical professionals.This is what we are up against
One of many experiences I have of ‘this massive culture problem within the medical profession’ was being told by a Bristol NHS Neurologist that he felt the ME label was ‘controversial’ & often seen in a pejorative light amongst medical professionals.This is what we are up against
It's time that everyone stopped gaslighting ME and Long Covid patients. These are real and devastating conditions, however politically convenient it might be to deny them (and to deny benefit payments to the patients!). Those who attack and mock pile suffering upon suffering.
It's time that everyone stopped gaslighting ME and Long Covid patients. These are real and devastating conditions, however politically convenient it might be to deny them (and to deny benefit payments to the patients!). Those who attack and mock pile suffering upon suffering.
Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) Please sign. organise.network/actions/petiti…
Anyone living with #SevereME is always on the edge of #VerySevereME. The symptoms are extreme & life threatening. Yet there is NO guidance (from NICE or ME charities) for health and social care professionals on how to manage #PESE #PEM. UK wide institutional failure: how #MEKills
Looking for any positive virus recovery stories of #verysevereME & any hints on what may have helped them get back to baseline. Sophia caught a virus in December, still has not ‘recovered’,still declining 😔Further loss of functionality, completely empty, feels poisoned, afraid.
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
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✨
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
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.
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.
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]
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
Paula Knight @Paula_JKnight
5K 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
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
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
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]
Bridget O'Shea @Bridget_OShea
2K Followers 2K Following Certified medical #writer, enthusiastic #journalist, cat mom, @UChicagoProEd, ME/CFS patient. Freelance journalist. Available for medical writing and editing.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Illustrator Interrupt.. @FranceyME
3K Followers 2K Following Illustration career interrupted by #ChronicIllness advocating for #MyalgicEncephalomyelitis #LongCovid #GWI #POTS #EDS @franceyme.bsky.social
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
Kerry Newnham @Squashedhedgi
1K Followers 941 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
Nele @NeleHelena
3K Followers 970 Following I tweet about the things I don't like: severe chronic illness / ableism / toxic positivity / medical gaslighting / dysautonomia / MEcfs / autoimmunity
🐾🐾🐾Claire @clearlu366
1K Followers 5K Following Tweeting approx 6 weeks.RegisteredTwitter2014 ,💕🐾https://t.co/LcaQeN8C1V…💕Kindness
Meriam Rllb @lowbatterydream
550 Followers 409 Following PharmD, 26, Long Covid March 2020 | ME/CFS | POTS | Personal IG : meriamrhallab | Chronic illness IG : lowbatterydreams
Paulie @paulie_paulie
526 Followers 1K Following Generally horizontal. Very Long Hauler. ME/CFS since 2011 (Moderate) #Gardening #Allotment #GrowYourOwn
Tom Kentish @FatiguableME
153 Followers 414 Following ME/CFS (Severe), Fibromyalgia, Anxiety, Depression. Hoping to get better; fighting not to get worse
🇩🇪 dermot gabri.. @RaadGabrael101
251 Followers 358 Following vriend voor iedereen die geen onverdraagzaamheid kent. wees mijn vriend!!!
Linzi @linzi_mcintosh
362 Followers 5K Following Mother of multiple disabilities including Hypermobility, fibromyalgia, to mention a few. All daughter health struggles. EDS. Autism. Gillian Barre' syndrome
OMFCharityMugs @BFWoodburn
10 Followers 163 Following Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵
Princess, The Tower @APainPrincess
28K Followers 27K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Rachel 44 @RachReynolds510
90 Followers 809 Following ME/CFS/Long Covid campaigner |Coeliac awareness| Get Tories Out
HabuS @SHaberbusch
12 Followers 96 Following
Michelle Miyagi @MichelleMiyagi
250 Followers 1K Following Former RN. Feminist. LGBTQIA Empowering us to choose self-compassionate boundaries. LOVE 🌈✌🏽🤗 The Logical Heart Knows Best #LongCOVID #MdDS
AuntChristi @CrazyAntChris
3 Followers 3K Following
A Tired Owl @aTiredOwl
1K Followers 3K Following #MaskUp #MyalgicEncephalomyelitis LC ally. Networking with #pwME and other chronic illnesses. ⒶⓋ
Isabella Fricker @yoga_with_izy
25 Followers 114 Following Advocate, Yoga Teacher & Therapist for Women’s Health UN Delegate - 2024
Red Carpet Medical @RedCarpetSolut1
246 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+
ME(cfs) SARCASTIC?? @HeyMyBodyAches
43 Followers 120 Following Bipolar Disorder 😡 😃 , Anxiety 😱 Agoraphobic 🏡 PTSD 😟 ME/CFS 🛌 OCD 🧽 and a Disabled Wheelchair User ♿️ Keeping the Pharmacy in Business Since 2008
Efthymios Kalafatis @lifeanalytics
5K Followers 3K Following Data Scientist, Patent owner of Artificial Intelligence-assisted methodology for Medical Discovery. Tweets are mine/not medical advice or endorsements.
babs @halfateaspn
201 Followers 550 Following 20s. she/her. disabled, queer and poc. ME/CFS and comorbidities. mostly bedbound. no bigots. be kind. 🇵🇸🏳️🌈🏳️⚧️
Renate-new account�.. @Renate834601
80 Followers 407 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Sim @docsimsim
1K Followers 405 Following PhD Biochemist, lapsed goth. Here to exchange info/advice on severe #MyalgicE, #MECFS #Dysautonomia. Politics: World Peace ☮️ #C4News
Reform Advocates @AdvocatesReform
563 Followers 1K Following Campaigning against Injustice in Children's Social Care - Advocating for the invisible - Creative writer and budding journalist - Uniting the community.
Sarah Bingham @sawahbingham
11 Followers 276 Following
Dan Walker @mrdanwalker6
40 Followers 1K Following This is not my fan page, but my private account fell free to follow.
Alagie @alagiejarju49
413 Followers 5K Following “Spread peace, love, and kindness wherever you go.”
BeNourishedUK @BeNourisheduk
301 Followers 946 Following MSc | Researcher | Natural Health Practitioner | Complex Chronic Health Conditions | Long Covid Specialist |
Nina A Tomei, MD @doctormom63
4K Followers 2K Following Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
Mandy Padfield @MandyPadders
77 Followers 650 Following Washer Woman Extraordinaire, Likes a dark beer, loves to dance to funk & soul,supporter of local theatre & other projects.
Cec Folan @CecFolan
13 Followers 58 Following
Walking 4 Hope @Walking4Hope
309 Followers 249 Following We are a charity supporting families and young people, promoting good mental health & well-being by resilience through nature. Charity number: 1202602
Rene Sugar @renesugar
4K Followers 4K Following
Astrid Ebner-Zarl (sh.. @EbnerZarl
2K Followers 2K Following Researcher @foresight_at Doctor of Sociology Youth/Childhood/Gender/Diversity Media/Education/Labour Market. On Twitter in my free time. #NaturePhotography🌳
Brutus Berserk @BrutusBerserk
296 Followers 3K Following
twisted sister @kelizrm
597 Followers 4K Following Mom, and G'mother!, Love nature's glories, my kids, cooking. Too much medical experience. DRS, NURSES, MED STAFF that THINK are my HEROES!
Melissa Loos @ml_pdh
702 Followers 986 Following EU-Listenplatz 9 für @pdh_eu, da Rücktritt von der Kandidatur nicht möglich #PCS #PASC Leugner der Pandemiefolgen vertrete ich selbstverständlich nicht.
Dylan Diaz-Infante @DylanDiazI45659
179 Followers 2K Following Sociocultural Anthropology PhD student @ASUBeingHuman. Transborder political ecology and water insecurity research. https://t.co/oexTONKL0N he/they
Traci Kurtzer MD @Kurtzer_MD
1K Followers 2K Following Med Dir Trauma Informed Care/Northwestern GYN/Gun & Interpersonal Violence Prev. LongCovid March 2020 Views my own @AMWAPATH @DoctorsForAmerica #HonorWithAction
Mille-feuille @napoleonovid
171 Followers 2K Following 29 yo, T1D, hEDS, LC, mild MECFS and fibromylagia since 17 yo, ND. A human being in becoming.
Heather Pellegrino �.. @HeatherScapego2
3K Followers 5K Following Blessed, positive mindset , attitude of gratitude, Wife. Mother . Chronic Illness Advocate . Please No DM s long Covid since 2021 #MCAS #POTS #chronicillness
Sally Doherty writes .. @Sally_writes
12K Followers 4K Following MG author: TOBY & THE SILVER BLOOD WITCHES. Winner @bbnya_official, SL Selfies & Rubery 2022. Coming Sep '24 @collinsprimary. Nature. Dogs. Books. ME/CFS♿
Sarah Ma @SarahMa75863863
31 Followers 113 Following Former academic, social scientist, and mom/caretaker to two kids, including one housebound with long COVID since 2022
MiriamB @MiriamBoyer11
25 Followers 169 Following Healthcare professional with interest in ME/CFS, mother, caregiver
R. @chronicsheepe
1K Followers 2K Following Hi. severe #MEcfs #longcovid #MCAS #POTS ♿️ | Ex-Film industry worker📽 | they/them | mstdn: [email protected]
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...
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
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.
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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✨
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
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
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
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
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. ✊
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.
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.
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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]
Agy Lena 🏳️�.. @agy_lena
9K Followers 290 Following Ex athlete, biker, climber, 1st class biomedicine grad. Entire life lost 2017 post viral ME/CFS. C💉injured 2021 thus turned from pro to anti vax
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
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
InvisibleGLove @GoreLloyd
447 Followers 728 Following DELTA-qualified EAL teacher; previously in EFL, ESOL and EAP (and subtitling). Caregiver to partner with v severe ME from Long Covid She / her
Emma Wooller @WoollerEmma
2K Followers 3K Following Coding is caring. Not that kind of Coder. I told you I was ill.
Edna, M.E.Advocate �.. @EdnaMacNamara
699 Followers 1K Following 💙 M.E.Carer & Advocate of son aged 30, ME for 10yrs 💙. RaisingAwareness for #PwME. #Carers #LC #findAcureME
Paulie @paulie_paulie
526 Followers 1K Following Generally horizontal. Very Long Hauler. ME/CFS since 2011 (Moderate) #Gardening #Allotment #GrowYourOwn
Princess, The Tower @APainPrincess
28K Followers 27K Following Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Fiona Wood ♿️💙.. @fionangreg
401 Followers 778 Following Wife, mum, Christian pwSME/CFS, FND, ME & FND Advocate. Observe small things, don't rush, love & forgive ❤️ #chronicillnesswarrior #loveyourself #loveothers
Michael Stingl @neurostingl
16K Followers 1K Following Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
Efthymios Kalafatis @lifeanalytics
5K Followers 3K Following Data Scientist, Patent owner of Artificial Intelligence-assisted methodology for Medical Discovery. Tweets are mine/not medical advice or endorsements.
UniteToFight2024 @U2Fight_World
3K Followers 121 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.
Russ Cook @hardestgeezer
354K Followers 185 Following The first person ever to run the full length of Africa @huel @perfecttednrg @hoka CHARITY FUNDRAISER⬇️
Maria-louise Williams @Mariararoo
1K Followers 3K Following Severe M.E warrior (One of the missing millions). Crohn's disease in remission.
Katie Johnstone @SockFoam
740 Followers 718 Following She/her. Chronically ill with ME. Founder of the ME/CFS Medical Education Campaign, blogger on Substack.
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
JANE DODGE @JaneDodgeC4
1K Followers 3K Following I'm a freelance journalist working mainly for the award winning Channel 4 News. [email protected]
Ror Preston @RorPreston
2K Followers 555 Following Lead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | #MECFS since 2018 | Own Opinions
Michael Alexander @Michaeltikus
946 Followers 2K Following I like animals 🐙 Zoology/Psych PG interested in nature connections, diving and tapirs. Member @Long_Covid / @RenegadeRes Lead contributor @wecrunchme LC-PLAN
Dr Paddy Barrett @Paddy_Barrett
51K Followers 3K Following Cardiologist who wants to help you prevent heart disease & live longer. Join over 20K+ others on the journey at https://t.co/TMgHNPXhci . Free 5 Day Course Below 👇
Rene Sugar @renesugar
4K Followers 4K Following
Martin Picard @MitoPsychoBio
10K Followers 753 Following Mitochondrial Psychobiology. Our team studies energy, mind-body communication, mitochondrial diseases, aging, and the science of health.
Rosanna Wregor @Anonetal123
310 Followers 649 Following Cosmopolitan, DVM, caregiver for soulmate with very severe ME, the barbell keeps me sane. @[email protected]
Benzodiazepine Inform.. @BZInfoCoalition
3K Followers 484 Following Nonprofit educating about the potential adverse effects of benzodiazepines taken as prescribed.
lissa @melissabreenx
3K Followers 3K Following writer of unfinished novels. disability advocate. chronically ill. sí/í. left.
Marco Wetzel (is figh.. @Gmwetz
2K Followers 833 Following Founder of @U2Fight_world // #UniteToFight2024 // #LongCovid and #MECFS advocate // #longcovid patient
Sally Doherty writes .. @Sally_writes
12K Followers 4K Following MG author: TOBY & THE SILVER BLOOD WITCHES. Winner @bbnya_official, SL Selfies & Rubery 2022. Coming Sep '24 @collinsprimary. Nature. Dogs. Books. ME/CFS♿
R. @chronicsheepe
1K Followers 2K Following Hi. severe #MEcfs #longcovid #MCAS #POTS ♿️ | Ex-Film industry worker📽 | they/them | mstdn: [email protected]
Ellie Fry @iEllieFry
3K Followers 1K Following Deputy Online Features Editor @DailyMirror | Previously @Independent | Contact: [email protected]
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.
Juli Maëlle @julimaelle
7K Followers 3K Following Ex-Fotografin 📸 & Musikerin 🎶, jetzt 1 v #Millionsmissing wg #MECFS & #Fibromyalgie. Leidenschaft still on. #noAfD #wirsindmehr
Helen Goss @HelenMMGoss
2K Followers 953 Following 🏴 @longcovidkids ❤️🔥 Parent/carer #LongCovidKids 🤘🏼 Advocate #LongCovid 🐾 Cat spam 🪐 Space nerd 🌪️ Chronically persistent force of nature
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 ⚽️
Dr. Michael 🍉 @internetuserf12
3K Followers 404 Following Working in plant medicine/acupuncture; #LongCovid since November 2020; ME + ITP since who knows he/they 🍉 #ZeroCovid #N95 [email protected]
Venlafaxine withdrawa.. @TalkVenlafaxine
326 Followers 565 Following Iatrogenic harm from Venlafaxine
Marc Veldhoen @Marc_Veld
15K Followers 1K Following Head of Lab, Professor Basic Immunology, T cell expert. Mass blocks reinitiated on abusive accounts and those spreading disinformation.
Invivyd @Invivyd
743 Followers 67 Following On a mission to protect the vulnerable from serious viral infectious diseases
In the abyss. v sever.. @AbyssPearl
513 Followers 169 Following On essaie de tenir le coup 🧠🫀 fighter. survivor. #mecfs, depanx, #pots, allergies & other. I'm one of the millions missing. chronic illness
daringshift @daringshift
2K Followers 1K Following Complexly chronically ill 2015-2023. Recently achieved full remission of symptoms. Hoping to help others do the same.
Alison Nolan @AlisonNolan9
2K Followers 2K Following Has a few biology degrees, did a virology PhD. Zero covid zealot™ Hard-line scientist© Covid avoider. #MECFS
Mark Wright @markeology
12K Followers 3K Following Professor, archaeologist, PhD, and recreational micropoet. #SCBWI. Budding YouTuber. Impatient #MECFS patient.
LakelandWalks&Talks @LakesWalksTalks
9K Followers 2K Following We aim to share the jewels in the #LakeDistrict crown! Guided Walks & Talks. Tweets by Steve Watts (Lake District Guide|Fell Runner|BGR #311) @fellrunphoto
Kyle @kylofone
499 Followers 930 Following used to spend a lot of time listening to loud guitars. now i mostly drink cinnamon tea. carer for my partner with very severe ME / Long Covid
William Fricker @frickerwills
2 Followers 16 Following
Trude Schei @t_schei
691 Followers 190 Following Architect with ME, patient advocate, ass.gen.sek i ME-foreningen, always exhausted
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
𝕀𝕒𝕟 𝔹𝕠.. @IanBourneArt
15K Followers 102 Following I draw. I write. I keep busy. Award winning artist working full time in health care.
Castaways @CastawaysDoc
140 Followers 3 Following Castaways is a docuseries shedding light on Long COVID & the fallout from the COVID Pandemic 💚💜
Winston Blick @winstoncb
3K Followers 901 Following #MECFS post-viral #longhauler | ally of #LongCOVID | quoter of @mecfsquotes | previously, 🚵🏼♂️ 🏂 🏃🏻🏕️ 📖
Testing for pwme through the GP/NHS is frustrating. Either it shows nothing or it shows something (abnormality) but they can't do anything about it. Either way it feels like it's pretty much a dead end 🙄. #mecfs #chronicillness
@tenacious_mumma @TheOldLostRoad Indeed. I noticed that it goes on to mention "CFS" a lot with various links on that, but I don't remember that being on the page that Dr shared. I just thought it remarkable that, in looking for a guideline on #MECFS, a Dr somehow ended up on a page about 'tiredness & fatigue'.
Christi Belcourt, contemporary Métis visual artist known for her paintings which depict floral patterns inspired by Métis and First Nations historical beadwork art #womensart
@tenacious_mumma @TheOldLostRoad There is this, which is what one Dr posted as some sort of gotcha during discussions on the new NICE guideline. I pointed out this isn't the NICE guideline (although it appears to have been updated since then). cks.nice.org.uk/topics/tiredne…
I have the most gorgeous little country park / bridleway on my doorstep - perfect for a run. Beautiful. Every time I go I have at least three flashes in my mind of being stabbed or pulled into the woodland and am suspicious of any bloke walking alone. This is the norm isn’t it?
Artist Isobelle Ouzman carves intricate 3D illustrations into discarded books found in dumpsters, recycling bins, and local thrift shops #womensart
@NICEComms @actionforme @MEAssociation @MEActNetUK #pwme #MyalgicEncephalomyelitis
GP said today his preferred reference source is CKS (Clinical Knowledge Summaries). CKS covers 370 topics with a 'focus on the most common & significant presentations in primary care'. There's no CKS for ME - not important or prevalent enough to be listed in an index used by GPs?
#UniteToFight2024 ✅ 5,000 Registrations 🥹 Together we have reached this incredible milestone! Registrations from Canada, USA, Mexico, Australia, UK, Japan, New Zealand, Germany, Finland, Norway, South Africa, France, Turkey, Greece - and many more countries… 16 days to go !…
Hannah Page, a baker from the US makes art with bread #WomensArt
I’ve recovered enough to sit up for a few hours with my babies! MRI tomorrow
'Californian Morning' (mid 20thc) by US artist and printmaker Emmy Lou Packard (1914-1998), a close friend of Frida Kahlo #WomensArt
@tenacious_mumma @frickercaro Send her my best wishes as always x
@tenacious_mumma Thinking of you and Sophia, I have very similar symptoms to Sophia so I completely relate to what you say here 💙
Jessica is gonna be taking a few days off social media. We've got a lot of stuff happening with all our different health needs, our son has been v unwell AGAIN and we're having issues with being in inappropriate housing with no one helping. I'll be online sharing bits for her
The reason we got off to a late start this morning…. We had a very productive conversation with @Keir_Starmer He agreed with us that ignoring the biggest killer of our young people (suicide) didn’t make sense #SuicidePrevention #togetherwecansavelives
📺 This "advertisement" will be reaching into the home of every Austrian in the next few weeks. Something similar to raise awareness of #MyalgicEncephalomyelitis is long overdue in the UK. #MECFS #r4today #BBCBreakfast
We are excited to show you the first video of our campaign. This video will air on Austrian television over the next few weeks. Please help us raise awareness by sharing this tweet. More info: weandmecfs.org/awareness Donations help us liberate those affected. 🙏 #MECFS 💙
Morning run with the prime minister. Sharp change from the morning runs I have got used to over the last year🤣 It was a massive privilege to get the opportunity to run with the prime minister yesterday and poke my head around 10 Downing Street. Something I’ll enjoy telling the…
ME Association Statement and Parliamentary Question: People with ME/CFS at risk of starvation Please read the ME Association statement about the lack of understanding and inadequate management of people with severe ME/CFS when admitted to hospital below:…
. @bmj_latest Rapid Response: Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis @Naomi_D_Harvey writes: "The current lack of services does not preclude care improvements. As doctors, nurses and other…
'Tulips and Forget-me-nots' by contemporary printmaker Vanessa Lubach #womensart
@exceedhergrasp1 I hope it will be video recorded and used to educate all doctors around the world. Thank you for doing this and everything else J. 💙🙏🏻💙
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